Well, the feeling of constant panic has subsided. It could have been from any number of things (steroids, serotonin, high magnesium levels, just too many medications to tolerate). I also don't seem to be having the burning inside, which is definitely a relief.
I still get hot flushes, where my face feels really hot, but it's less intense and painful. The panic has been replaced with a low level of dread/fear in the pit of my stomach. It's pretty much always there. I just dread continuing to live with this pain.
The pain in my head and face has persisted. I can't say for sure that it's a migraine at this point. It's not actually throbbing. It's just constant pain that is worsened by sound, light, movement, exertion, and especially smells. It's in my temples and cheeks, the worst of it in my left cheek. It goes deep inside, feels like through my cheekbones and into the roof of my mouth. It just seems that this pain is a part of me now. Like my face doesn't know how to feel any other way.
The pain also just seems to go up and down throughout the day. Never below a 5. But it climbs up to an 8 or 9, sometimes for hours at a time. (I really don't use number 10 on the pain scale. It's supposed to be for pain that makes you pass out, and medical professionals don't seem to take you seriously if you use it.)
I'm taking nothing for it this week, because clearly my system got overloaded. So it needs a break.
But so do I. Do I even exist outside of this pain anymore? I'm trying to stay in touch with friends, and stay positive for family, but it can be hard. It's probably hardest on my husband, because he has to live with me.
I haven't started back on the Topamax (anti-seizure medication, migraine prevention), because I'm afraid it was contributing to the panic. I will wait a couple more days to be sure the panic is gone, then try it again. I really hope I can tolerate it. Because I know they are about out of things to try for me.
My POTS has been weirdly stable the last couple days. Don't know what that's about, as I haven't been able to exercise in weeks now. I tried once to ride the bike for about 10 minutes, but as soon as I get the blood pumping, my head pain increases again. So I had to ride in slow motion, basically.
My fears of this ever ending are pretty constant. It feels like I'll never be able to leave my little darkened cave (our apartment). I'm missing out on life--more than usual. I'm used to missing out on most things. But this is a whole new level.
The facial pain is so severe, it's getting painful to chew. (My jaw and bite are supposed to be quite healthy-thanks to orthodontics and wearing my retainers every night. No grinding or clenching.)
I'm not seeing the doctor again right away, because I need time to give Topamax a try.
I've heard about a sphenopalatine ganglion nerve block, where they thread a catheter up your nose and spray lidocaine, trying to numb a nerve back there. Not sure if it would be helpful for me, but it's something I haven't tried.
They said they could try me on Gabapentin again, but I don't feel really hopeful about that.
I'd be interested to know if medical cannabis would help this pain, but of course, afraid to actually try it, when I don't know what my reaction would be.
I could end up back at a pain management doctor, with an endless cycle of opioids. But I don't tolerate those very well either.
For now, I have to just keep existing like this. And try not to think what the rest of my life looks like, or what I'm missing out on. Just survive.
Luckily, I have great screen dimmers on my phone and tv. So, I can usually tolerate some amount of entertainment. I feel like I've seen every show ever made that isn't too loud or hard to follow. I'm currently watching "Death in Paradise," "Army Wives," and "Gilmore Girls." With some random movies mixed in at times.
Thanks for checking in with me. I may be up for visitors at times this week, but they would need to be incredibly unscented.
Saturday, June 25, 2016
Wednesday, June 22, 2016
DHE Infusions
Well, I ended up being admitted through the emergency room on Friday night. Basically, it seemed clear that the migraine wouldn't break on its own, and the steroid pack hadn't worked. Also, it would be easier for everyone if I got an inpatient stay done over the weekend. (I couldn't imagine having made it through without my husband there 18 hours a day!)
When I was admitted through the emergency room, my blood pressure was actually high (155/95), which is really unusual for me. And my heart rate was about 100. I had also had a panic attack while packing for the hospital, due to past trauma and my fears of something going terribly wrong.
So, I got my first DHE treatment at 11:00 on Friday night, along with some Benadryl, Toradol (anti-inflammatory), and Zofran (anti-nausea). We were up late that night, as I wasn't really admitted until 2:30 a.m. That was a rough start for my system, to only get a few hours' sleep that night. I still don't have the ability to nap during the day, no matter what. (After years of hypersomnia, my body has gone the other direction, and can't sleep without sedatives.)
The next infusion ended up being at about 10:30 a.m. on Saturday. After this, my heart rate was resting in the 150s, still with elevated blood pressure. But no one seemed too worried. I felt very on edge, but I assumed that was due to my anxiety about being in the hospital, as well as the fact that my POTS was already flaring due to lack of exercise for weeks and lack of sleep the night before.
I developed severe nausea from the DHE, which is expected. The Zofran was managing it well. My migraine pain was very high on Saturday. Before my third infusion of DHE, I received my Zofran IV around 6:00. I started developing a feeling of burning in my chest. Gradually, the burning spread until it felt like my insides were on fire throughout my body. Then, I developed the restlessness. My body couldn't stop twitching and moving. Benadryl IV did not relieve my reaction at all. Valium did calm it down.
So, no one knew what could have caused the reaction. Of course, it's not a normal reaction. And it's more unusual that it didn't happen until after my third dose. My theory was that I developed a mild case of serotonin syndrome. Since I already take other medications that raise serotonin levels, it is definitely possible that the additive effect of multiple doses led to the reaction. The doctors seem to think this is a likely possibility.
It was four years ago that I had the last suspected serotonin reaction. That time, it was a combination of my usual anti-depressants, plus frequent triptans and Tramadol. I had fevers on and off for a week, reaching 104 degrees at one point. Then, my body developed the restlessness, twitching and moving day and night. No one thought of serotonin syndrome at the time. But I was put on Valium, reduced my dose of Cymbalta, and laid of the migraine and pain medications for a while. It did resolve, but not with the help of any doctors. That was another time I was on my own to figure out what is wrong with my body.
All migraine treatment was discontinued at this point on Saturday night. My migraine had been reduced, but still persisted.
Sunday morning, Dr. Barboi came in for a consult. He had been monitoring my care during my stay, so he came to check on me. I was glad to meet him, as he is the POTS specialist I've been trying to see for months. I couldn't even get put on his wait list before this. He had a lot of ideas, and seemed genuinely intrigued by my complex medical state. He said to me, "you know you're a mutant by now." And I do know that.
He thought it was best that I be discharged as soon as possible, because my body just won't be able to handle any of these intense interventions. Which is pretty much what I was afraid of going into it. But I agreed about being discharged. I wanted to get home to sleep desperately. My heart rate was also sky high Sunday morning (170 just changing clothes). I knew getting into a lower stress environment and sleeping in my bed would help with that.
So, since then, I've been dealing with constant symptoms. My whole system is really angry right now. I still have a migraine. Today is day 17 with this one. Pain level has been between 5 and 8 since getting home. I haven't taken pain medication, because there probably isn't anything that would help that I can tolerate.
I'm still trying to sort out the rest of these symptoms. I'm still getting the burning sensation in waves, but not as intensely. I've tried to reduce my serotonergic medications, in case it is still from elevated serotonin levels. But last week, when I was on the steroids, I was getting hot flashes and burning sensations. And even before that, I was getting slightly elevated temperature and facial burning at times. It could be a mast cell symptom, but I am on the mast cell stabilizers. I really don't know where it's coming from. The burning sometimes feels like my skin is burning, but sometimes like my insides.
In addition, I'm still having major problems with adrenaline, constantly. It's that stomach-dropping sensation. Of course, this started before my inpatient stay, too. With my more frequent migraines, and so many unavoidable migraine triggers, I've developed a ton of anxiety around that. Then, this endless migraine started. Then, I was put on the steroids, which made me really hot and panicky, as well. Then, of course, the hospital stay was extremely stressful, as well as the lack of sleep and the intense medications. But now that I'm home, I'm still having the adrenaline sensation all day, and most of the night. And every little worrying thought is making me panic. I tried a tiny dose of Clonidine today, to block some of the adrenaline. It does seem to be helping a big with the intensity of the panic. But I can't take more, because of my tendency toward low blood pressure.
However, my heart rate and blood pressure are back to my usual, prior to the hospital. Heart rate elevated to the 80s or 90s at rest, but not higher than that. Blood pressure a little low during the day and very low over night.
I've worked so hard to get to this place in my life, where I can work a little, socialize a little, and working on maintaining my health the rest of the time. And I've been content overall for a few years now. But it feels like I could be losing everything. I can live with a lot of things. I've learned to accept so many daily symptoms and medications as part of my normal, and take them in stride to a large extent. But my current state is not tenable. I'm crying many times a day. I'm panicking frequently. I'm not sleeping without extra sedatives. I'm in a lot of pain. And I can't commit to do anything but hide in my darkened apartment, trying to stand it all.
I'm having so much trouble sorting out right now which symptoms are coming from what. Should I be taking less Cymbalta? I'm already taking less Remeron. Should I keep taking the Topamax, or could it be contributing? Is there any point in trying a triptan or a Toradol again, and is it even worth the risk of raising my serotonin levels? There doesn't seem to be a doctor that can help me sort this out. Potentially Dr. Barboi could, but who knows when I'll be able to get an appointment with him. But also, it will just take some time and some experimentation for now. Because I don't have typical reactions to anything. It is just really hard to be patient when nothing seems to be helping, and I'm still in a migraine state 24/7.
The thing is, I know that there are people with chronic intractable migraine. It's a permanent migraine state. And this could certainly be how it starts. Long-term migraines often don't break without these combination treatments. And my system doesn't seem to be able to handle them.
Hopefully, I will be able to tolerate the Topamax as a preventative again soon. But that won't help for a while. It seems that nothing will help for a while.
I've definitely lost weight in the last week, as all my clothes are loose. I haven't been able to exercise in weeks now, which is horrible for my loose EDS joints and for my POTS.
Please understand if I am not able to attend social things for a while. I'm trying to figure out how to get out of this hole, so I can semi-function again. I haven't been able to care for myself, cook food on my own, or clean up our apartment. I just want to get back to where I was. I'm really sad, and I'm really scared. I want to be a whole person again, and I want to be able to be there for those I love. I just hate this. And I do not see the light at the end of this tunnel right now.
When I was admitted through the emergency room, my blood pressure was actually high (155/95), which is really unusual for me. And my heart rate was about 100. I had also had a panic attack while packing for the hospital, due to past trauma and my fears of something going terribly wrong.
So, I got my first DHE treatment at 11:00 on Friday night, along with some Benadryl, Toradol (anti-inflammatory), and Zofran (anti-nausea). We were up late that night, as I wasn't really admitted until 2:30 a.m. That was a rough start for my system, to only get a few hours' sleep that night. I still don't have the ability to nap during the day, no matter what. (After years of hypersomnia, my body has gone the other direction, and can't sleep without sedatives.)
The next infusion ended up being at about 10:30 a.m. on Saturday. After this, my heart rate was resting in the 150s, still with elevated blood pressure. But no one seemed too worried. I felt very on edge, but I assumed that was due to my anxiety about being in the hospital, as well as the fact that my POTS was already flaring due to lack of exercise for weeks and lack of sleep the night before.
I developed severe nausea from the DHE, which is expected. The Zofran was managing it well. My migraine pain was very high on Saturday. Before my third infusion of DHE, I received my Zofran IV around 6:00. I started developing a feeling of burning in my chest. Gradually, the burning spread until it felt like my insides were on fire throughout my body. Then, I developed the restlessness. My body couldn't stop twitching and moving. Benadryl IV did not relieve my reaction at all. Valium did calm it down.
So, no one knew what could have caused the reaction. Of course, it's not a normal reaction. And it's more unusual that it didn't happen until after my third dose. My theory was that I developed a mild case of serotonin syndrome. Since I already take other medications that raise serotonin levels, it is definitely possible that the additive effect of multiple doses led to the reaction. The doctors seem to think this is a likely possibility.
It was four years ago that I had the last suspected serotonin reaction. That time, it was a combination of my usual anti-depressants, plus frequent triptans and Tramadol. I had fevers on and off for a week, reaching 104 degrees at one point. Then, my body developed the restlessness, twitching and moving day and night. No one thought of serotonin syndrome at the time. But I was put on Valium, reduced my dose of Cymbalta, and laid of the migraine and pain medications for a while. It did resolve, but not with the help of any doctors. That was another time I was on my own to figure out what is wrong with my body.
All migraine treatment was discontinued at this point on Saturday night. My migraine had been reduced, but still persisted.
Sunday morning, Dr. Barboi came in for a consult. He had been monitoring my care during my stay, so he came to check on me. I was glad to meet him, as he is the POTS specialist I've been trying to see for months. I couldn't even get put on his wait list before this. He had a lot of ideas, and seemed genuinely intrigued by my complex medical state. He said to me, "you know you're a mutant by now." And I do know that.
He thought it was best that I be discharged as soon as possible, because my body just won't be able to handle any of these intense interventions. Which is pretty much what I was afraid of going into it. But I agreed about being discharged. I wanted to get home to sleep desperately. My heart rate was also sky high Sunday morning (170 just changing clothes). I knew getting into a lower stress environment and sleeping in my bed would help with that.
So, since then, I've been dealing with constant symptoms. My whole system is really angry right now. I still have a migraine. Today is day 17 with this one. Pain level has been between 5 and 8 since getting home. I haven't taken pain medication, because there probably isn't anything that would help that I can tolerate.
I'm still trying to sort out the rest of these symptoms. I'm still getting the burning sensation in waves, but not as intensely. I've tried to reduce my serotonergic medications, in case it is still from elevated serotonin levels. But last week, when I was on the steroids, I was getting hot flashes and burning sensations. And even before that, I was getting slightly elevated temperature and facial burning at times. It could be a mast cell symptom, but I am on the mast cell stabilizers. I really don't know where it's coming from. The burning sometimes feels like my skin is burning, but sometimes like my insides.
In addition, I'm still having major problems with adrenaline, constantly. It's that stomach-dropping sensation. Of course, this started before my inpatient stay, too. With my more frequent migraines, and so many unavoidable migraine triggers, I've developed a ton of anxiety around that. Then, this endless migraine started. Then, I was put on the steroids, which made me really hot and panicky, as well. Then, of course, the hospital stay was extremely stressful, as well as the lack of sleep and the intense medications. But now that I'm home, I'm still having the adrenaline sensation all day, and most of the night. And every little worrying thought is making me panic. I tried a tiny dose of Clonidine today, to block some of the adrenaline. It does seem to be helping a big with the intensity of the panic. But I can't take more, because of my tendency toward low blood pressure.
However, my heart rate and blood pressure are back to my usual, prior to the hospital. Heart rate elevated to the 80s or 90s at rest, but not higher than that. Blood pressure a little low during the day and very low over night.
I've worked so hard to get to this place in my life, where I can work a little, socialize a little, and working on maintaining my health the rest of the time. And I've been content overall for a few years now. But it feels like I could be losing everything. I can live with a lot of things. I've learned to accept so many daily symptoms and medications as part of my normal, and take them in stride to a large extent. But my current state is not tenable. I'm crying many times a day. I'm panicking frequently. I'm not sleeping without extra sedatives. I'm in a lot of pain. And I can't commit to do anything but hide in my darkened apartment, trying to stand it all.
I'm having so much trouble sorting out right now which symptoms are coming from what. Should I be taking less Cymbalta? I'm already taking less Remeron. Should I keep taking the Topamax, or could it be contributing? Is there any point in trying a triptan or a Toradol again, and is it even worth the risk of raising my serotonin levels? There doesn't seem to be a doctor that can help me sort this out. Potentially Dr. Barboi could, but who knows when I'll be able to get an appointment with him. But also, it will just take some time and some experimentation for now. Because I don't have typical reactions to anything. It is just really hard to be patient when nothing seems to be helping, and I'm still in a migraine state 24/7.
The thing is, I know that there are people with chronic intractable migraine. It's a permanent migraine state. And this could certainly be how it starts. Long-term migraines often don't break without these combination treatments. And my system doesn't seem to be able to handle them.
Hopefully, I will be able to tolerate the Topamax as a preventative again soon. But that won't help for a while. It seems that nothing will help for a while.
I've definitely lost weight in the last week, as all my clothes are loose. I haven't been able to exercise in weeks now, which is horrible for my loose EDS joints and for my POTS.
Please understand if I am not able to attend social things for a while. I'm trying to figure out how to get out of this hole, so I can semi-function again. I haven't been able to care for myself, cook food on my own, or clean up our apartment. I just want to get back to where I was. I'm really sad, and I'm really scared. I want to be a whole person again, and I want to be able to be there for those I love. I just hate this. And I do not see the light at the end of this tunnel right now.
Friday, June 17, 2016
Status Migrainosus
Well, the migraine has not gone away. I'm almost done with the steroid pack, and the migraine persists. Pain level is between a 5 and a 7 today. It's much better than the 9-10 I was at before the steroids, but still hard to manage. I'm still very light and sound sensitive, and my body doesn't tolerate exertion. When the pain has lasted this long, they call it status migrainosus. I am stuck in a migraine state.
I saw the neurologist yesterday, and she was wonderful. She started me on Topamax, as well as the supplement Butterbur. I've been on both of them in the past, but we're trying again. But both of those take a month or two to become effective. So, they can't help with my current state.
Basically, I'm going to try to make it through the weekend with Toradol and Flexeril, and just try to wait it out. If that doesn't work, the doctor has recommended an inpatient stay for a few days for a DHE infusion treatment. This medication can break a current migraine state, as well as kind of give your brain a "reset," so you won't be so prone to migraines for a while. The medication is given by IV every 8 hours for 2 or 3 days. Side effects can be pretty intense, so you need to be inpatient to be monitored. Of course, with my medical trauma and very high maintenance body, I can't imagine being a patient in a hospital again. But....I also can't imagine tolerating this migraine much longer.
In addition to all my stuff, Wilma's refusing food again today. And apparently her vet is in the hospital.
That's the update for today. I'll update again if I have news.
I saw the neurologist yesterday, and she was wonderful. She started me on Topamax, as well as the supplement Butterbur. I've been on both of them in the past, but we're trying again. But both of those take a month or two to become effective. So, they can't help with my current state.
Basically, I'm going to try to make it through the weekend with Toradol and Flexeril, and just try to wait it out. If that doesn't work, the doctor has recommended an inpatient stay for a few days for a DHE infusion treatment. This medication can break a current migraine state, as well as kind of give your brain a "reset," so you won't be so prone to migraines for a while. The medication is given by IV every 8 hours for 2 or 3 days. Side effects can be pretty intense, so you need to be inpatient to be monitored. Of course, with my medical trauma and very high maintenance body, I can't imagine being a patient in a hospital again. But....I also can't imagine tolerating this migraine much longer.
In addition to all my stuff, Wilma's refusing food again today. And apparently her vet is in the hospital.
That's the update for today. I'll update again if I have news.
Wednesday, June 15, 2016
Breaking a migraine cycle
I have had a migraine every day since my last post. It has been hell. It started with a perfume trigger on Tuesday. The migraine started that night and went into Wednesday. Thursday, I got a new migraine. And Friday night, another one. I think the thunderstorms were to blame. Saturday, we attended a wedding. There was festive music and plenty of perfume. So, many more triggers. I had already used a triptan to treat the previous 3 migraines, so I wasn't allowed any more. (Puts you at risk for medication overuse headache- which is really just endless intractable migraines.) I tried Toradol, Flexeril, and Benadryl. But the pain was severe, and has persisted.
Monday, the doctor called in a steroid pack for me. The steroids have made my POTS go nuts, as well as interfered with my sleep. My blood pressure, heart rate, and body temperature have been all over the place. The steroids cause severe anxiety. Thank goodness, the pain is easing up, but not gone yet. I'll be on it for a total of 6 days, tapering off gradually.
I also can't exercise during any stage of a migraine. So, I haven't exercised in over a week. And that makes my POTS so much worse. I can exercise with significant joint and muscle pain. I can exercise with high or low blood pressure. I even ride the bike when I am barely conscious some nights. Because I know I'll feel better the next day. But, I can't exercise with a migraine.
I also can't exercise during any stage of a migraine. So, I haven't exercised in over a week. And that makes my POTS so much worse. I can exercise with significant joint and muscle pain. I can exercise with high or low blood pressure. I even ride the bike when I am barely conscious some nights. Because I know I'll feel better the next day. But, I can't exercise with a migraine.
You would think I would be used to severe pain, but somehow, it's always worse than I remembered it. Or maybe the pain really does get a little worse each time.
Next time the pain is this unmanageable, I think I'll go into the hospital for an infusion of medicine to abort the pain. Because this drawn out process has been really difficult. I'm still so grateful I had something to help with the pain.
But I am left with even more crippling anxiety about my migraine triggers. I'm terrified to be around people or go anywhere that may be scented (which is anywhere). I don't want to commit to attend anything, or invite anyone into my home (i.e. my safe space). I don't even want to cook in my home, as the tiniest bit of smoke can trigger another migraine.
The stupid thing about chronic migraines is that the more migraines you have, the more susceptible you are to triggering another migraine. Especially in the time immediately after the acute pain phase (the first 24-48 after the pain dulls). That is when you are extremely vulnerable to triggering a new migraine. And for me, the acute pain phase is always at least 48 hours if the migraine isn't treated. Just because I get away from the trigger, doesn't mean the pain will start to go away. The pain will actually steadily increase for hours. And I can NEVER sleep off a migraine. It has to be treated. But you can only safely treat 9 migraines per month with abortive treatment. I have had to push this to 12 lately. But anymore than that, and you will get stuck in a rebound cycle of endless pain.
Luckily, I happen to have an appointment with my migraine specialist tomorrow. It was supposed to be the day for my fourth Botox treatment, but instead, we'll be reevaluating my preventive treatment. In my mind, I'm ready to go back on Topamax. It is an anti-seizure medication that is nicknamed Dope-amax for its tendency to cause major brain fog. If you know me at all, you know I suffer from major brain fog on a regular basis. I spend a lot of time staring, unable to think clearly. But, when I took this medication several years ago, it significantly reduced my migraines. And my current state leaves me desperate enough to try it again.
We'll see if the doctor agrees with this idea, or if she has any other ideas.
For now, I am relieved the pain is reduced to a moderate level, and is no longer severe. But I can't say the migraine is gone. I'm in the postdrome stage. I still have light sensitivity and a lingering achy tension in my head. I'm also terrified to go anywhere, see anyone, or make any plans in this state. And the steroids are only exacerbating these fears.
In addition to all of this, my girl, Wilma has been sick. And I haven't been well enough to get her to the vet. At least we're keeping each other company.
I'll update as soon as I can after tomorrow's appointment.
Tuesday, June 7, 2016
Doing Better :)
I am happy to report that I have made some huge improvements since my last post in April! The single thing that has made the biggest difference for me is sleep. I was prescribed an extended release Ambien, and I am actually sleeping again! Now that I get enough sleep most nights, I am not having any adrenaline surges or anxiety! I'm also not feeling depressed anymore. It is such a relief! I truly have reclaimed my sense of well-being. I've also left the house alone a few times.
I've been able to exercise more, so my POTS symptoms are doing well.
I have tried Clonidine, but it seems to lower my blood pressure too much. And when my blood pressure is very low, my heart over compensates by pounding, and the pounding heart wakes me up. So, I've discontinued this. I also haven't needed my beta blocker, since I'm not getting the adrenaline surges.
I understand that Ambien is not the best medication to be on regularly, but at this point the benefits are far outweighing the costs.
My migraines, unfortunately, are persisting at the same level of frequency and intensity. I'm triggered mainly by weather changes and perfumes. I've started getting more visual auras preceding my migraines. It's really annoying. I'm seeing my neurologist again in a couple weeks, to see if we can come up with any ideas to try. I'm a little worried she'll say that she's out of ideas, as I've heard that from headache specialists before. But hopefully, we'll come up with something to try.
We have a couple small trips planned this year, which is something I wouldn't have been able to do when I wasn't sleeping.
I'm still not satisfied with my level of wakefulness on an average day. On days when I don't have a lot of interaction with people, I tend to spend a lot of time staring. I would still like to be put back on a stimulant, at least for certain days. But I don't have a doctor currently to prescribe it. And my PCP doesn't like prescribing stimulants. My psychiatrist may consider it in the future.
I still don't have an appointment with the local POTS doctor. I just want to be put on the waiting list, but I can't seem to get a call back from his office. I think it has to do with me already seeing another neurologist in the practice, but she's only treating my migraines, not managing my POTS. This is an item on my medical to-do list.
I also need to see my PCP again soon. I'm hoping to get a handicap placard from him, as I'm frequently using my wheelchair or walker.
My joints are still being difficult. They seem to take turns causing me trouble. My knees were terrible for a while, but they've eased up a bit. My SI joints, spine, shoulders, and feet also get pretty bad at times. I don't have a doctor managing my EDS, so I currently just look up PT exercises online and buy OTC braces. There really is a major shortage of EDS doctors. Dr. Tinkle's wait list is closed to new patients, because he is in such high demand. I was diagnosed in Baltimore, but can't reasonable travel back there just to manage symptoms.
I'm beyond frustrated that with my migraines being chronic, I can't take any pain medication for my body aches and joint pain.
But honestly, even with all of these troubles, I just feel relieved that I'm not stuck in the depressed/anxious hole I was in when I wasn't sleeping. I feel somehow capable to cope with all of these other issues.
I've been able to exercise more, so my POTS symptoms are doing well.
I have tried Clonidine, but it seems to lower my blood pressure too much. And when my blood pressure is very low, my heart over compensates by pounding, and the pounding heart wakes me up. So, I've discontinued this. I also haven't needed my beta blocker, since I'm not getting the adrenaline surges.
I understand that Ambien is not the best medication to be on regularly, but at this point the benefits are far outweighing the costs.
My migraines, unfortunately, are persisting at the same level of frequency and intensity. I'm triggered mainly by weather changes and perfumes. I've started getting more visual auras preceding my migraines. It's really annoying. I'm seeing my neurologist again in a couple weeks, to see if we can come up with any ideas to try. I'm a little worried she'll say that she's out of ideas, as I've heard that from headache specialists before. But hopefully, we'll come up with something to try.
We have a couple small trips planned this year, which is something I wouldn't have been able to do when I wasn't sleeping.
I'm still not satisfied with my level of wakefulness on an average day. On days when I don't have a lot of interaction with people, I tend to spend a lot of time staring. I would still like to be put back on a stimulant, at least for certain days. But I don't have a doctor currently to prescribe it. And my PCP doesn't like prescribing stimulants. My psychiatrist may consider it in the future.
I still don't have an appointment with the local POTS doctor. I just want to be put on the waiting list, but I can't seem to get a call back from his office. I think it has to do with me already seeing another neurologist in the practice, but she's only treating my migraines, not managing my POTS. This is an item on my medical to-do list.
I also need to see my PCP again soon. I'm hoping to get a handicap placard from him, as I'm frequently using my wheelchair or walker.
My joints are still being difficult. They seem to take turns causing me trouble. My knees were terrible for a while, but they've eased up a bit. My SI joints, spine, shoulders, and feet also get pretty bad at times. I don't have a doctor managing my EDS, so I currently just look up PT exercises online and buy OTC braces. There really is a major shortage of EDS doctors. Dr. Tinkle's wait list is closed to new patients, because he is in such high demand. I was diagnosed in Baltimore, but can't reasonable travel back there just to manage symptoms.
I'm beyond frustrated that with my migraines being chronic, I can't take any pain medication for my body aches and joint pain.
But honestly, even with all of these troubles, I just feel relieved that I'm not stuck in the depressed/anxious hole I was in when I wasn't sleeping. I feel somehow capable to cope with all of these other issues.
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