IceLizard

I've been home from the hospital for about two weeks now. I have not had another serious attack, I can walk again and do some basic things, but mostly I have this overwhelming mental and physical fatigue. I can sleep for 10-12 hours at night, then two or three or four hours during the day as well. I feel like sleeping or resting almost all of the time. It is debilitating. I have switched my cardiologist and ditched my neurologist but I have retained the same pcp. Being in Northern Louisiana, I am far from doctors who specialize in dysautonomia and the conventional treatments are not enough. I have not had a full autonomic workup and I might need further testing to be able to pin down what is going on with me so it can be directly addressed. I have asked Dr. Svetlana Blitshteyn about the possibility of a phone consultation because I saw on her website that she is doing those now. Has anyone had a phone consultation before? How do you manage this condition when the doctors who treat it are so far away?

Interesting. I'll describe how it was when I was stuck at the hospital. I would have these episodes, triggered when trying to stand or by being moved or by sitting, or sometimes out of the blue while I was laying down, where I would feel like I was passing out or close to it and my muscles would start to tense and shake. It would start in my feet and lower legs and my hands would be shaky if I tried to use them. If it progressed my entire body would become extremely tense and tears would be forced from my eyes. I would convulse uncontrollably with limbs flopping and back arched and be unable to stop it or respond, although I am aware it is happening. During this time I would be out of breath and my heart rate would rise up to about 200 bpm. It would usually resolve itself in a few minutes, but when it went on longer they put me on meds like Ativan or Dilaudid. These meds reduced the shaking just a little, but I would still have the attacks. My bp is always higher after these attacks. Is this what is happening to you? I hope they find out how to treat you. If they do, maybe you can recommend a doctor to me, because I'd like to know more about what is going on, too. PS You're not crazy, I completely believe you and I hope you can make progress with doctors who do, too.

Hi Becia. I feel glad for you that you finally found a place that will take care of you. I was lucky enough to have excellent care in the hospital near my home, and it was still a very trying experience. My POTS is kind of odd: I will have drops blood pressure causing me to pass out and have seizure-like activity, but afterwards my bp can be high. It is almost as if my body over-corrects for the drops. Sometimes the doctors will miss the sudden drops in BP and only register the high or normal bp which confuses everyone because I do pass out. I asked about continuous monitoring of bp, but they said they would have to insert an arterial line. I hope you continue to do better. Thanks for sharing your story with us.

Becia, when I had a migraine that included difficulty speaking and confusion (along with dizziness, vomiting, numbness, visual disturbances, and paralysis on one side), I was diagnosed with a rare kind of migraine called a hemiplegic migraine. See information here: http://www.webmd.com/migraines-headaches/hemiplegic-migraine-headaches-symptoms-causes-treatments I am worried about your trouble swallowing because I am afraid you may become dehydrated again. I really hope you can find doctors who will work with you to get better. You may need further autonomic testing because difficulty swallowing can be a sign of autonomic neuropathy.

My doctor wrote me a medical exemption so that if I fell below full-time student status in hours, I would not lose my financial aid. I was able to keep my state TOPS scholarship while being only part-time. This worked here in Louisiana; you might inquire if there is something similar you can do. Best, IceLizard

Hello Faintinggoat, Prednisone can cause tachycardia and dizziness (listed as common side effects). I usually try to avoid all steroids because they make me feel worse (Except Florinef). IV saline can help, but you would have to make regular visits to your doctor's office to get infusions. Before trying that, doctors often prescribe Florinef because it increases blood volume by helping you retain salt and water. Since the Florinef increases my heart rate, I am also on a beta blocker to bring that down. Do you have accommodations for the class on campus? When I was an undergraduate, I had an accommodations letter explaining that I may miss classes and should be allowed to make up assignments. The other option you could go with is an incomplete, so you can finish your class on your own time later. Best wishes, IceLizard

Glad you made it out of the hospital, but sorry you are doing so poorly. I hope you find some answers to your pain soon.

I was in the ER last week, and having spells even while laying down, so unfortunately I know how you feel. Sometimes it does feel like you are dying. Have they tried giving you IV saline for the dehydration? IV Phenergan for the vomiting? Hang in there! You'll make it out of this.

Hi, LastUnicornLady. According to Dr. Grubb, over half of patients with the hyperadrenergic form of POTS have migraines as well. I have migraines, too, and I have reduced their incidence and severity by following a diet free of migraine triggers. This diet was recommended by my neurologist instead of medication. My main diet triggers were caffeine and chocolate, followed by onions and garlic. Other triggers for me include doing too much in one day and hormonal changes. Here is a link about the diet: http://www.neuropt.org/docs/vsig-english-pt-fact-sheets/migraine-diet-triggers.pdf?sfvrsn=2

My TerraTrike recumbent trike is my main mode of transportation since I am not safe to drive. Even if I am wobbly when upright and walking, I can lay back and pedal easily. If I don't push myself too hard I usually feel much better after riding.

Thank you all for your support. Even though I do not know you personally, it helps to know that you all understand.

Today is the first day I have not had an attack in over a week. I hope tomorrow will be the same.

In the ambulance my heart rate came down to about 120 bpm. Oxygen seemed to help me a lot. I don't know how long it stayed so high because I am out of it when it happens and lose track of time. I do know that it would spike really quickly, like going from 80 to 170 bpm in a few seconds. I would tense and have convulsions. During the convulsions it would climb higher, I think the highest it got was 203 bpm. After the convulsions it would slowly come back down to normal. Sometimes I would convulse for, I'm guessing, 10 minutes or more. And they can occur in bunches. I was given Ativan for the convulsions, but that didn't completely take them away and my heart rate was still very high. I think the thing that helped the most during those times was the oxygen. Most of the time if I am laying down it will resolve itself within a few minutes.

Hi you all. I haven't been on in a little while, because I was stuck in the hospital. I had stayed home last Thursday because I was not feeling well. My heart woke me up from my nap beating at 200 bpm! I was very shaky and it felt like my heart rate would not come down, so I called paramedics because I was alone. They were confused at first because when they knocked no one answered the (unlocked) door! I heard them talking among themselves: are you sure this is the right address? I skooted across the floor to open the door. I was taken to the ER and given IV fluids. I was told to discontinue the Clonidine I had just started, so I removed the patch. After the fluids, the doc tried to sit me up, but my heart rate went up to 197 bpm. Then they tried it again while I was hooked up to an EKG and then I passed out. So, I was admitted. Long story short, they played with my meds, at times making it worse and I had episodes of high heart rate/passing out/convulsions multiple times a day, some even while laying down trying to sleep. I often could not get up to use the bedside toilet had to use a bed pan (hate those). They found that I am dependent on Florinef, but that it has to be coupled with a beta blocker. Florinef alone raises my heart rate. Beta blockers alone reduced my heart rate, but made me pass out more often. I am at home now recovering, but I still cannot stand up straight yet without having an incident. I have to move around the house bent over. It's funny looking but it works. I have left my graduate program and now I am just trying to focus on getting some functionality back...

Sue1234, Can you work or go to school? I am finding out that graduate school is too much for me and I will probably either have to take a break or quit altogether. I have a research scholarship, so this is really traumatic for me. I have never been able to do anything full-time for very long. I am trying not to get disheartened, but it is difficult.

Hello bluegirl. I just started the clonidine time-release patch last Thursday. I had developed high blood pressure on Florinef and plenty of salt. Pros so far: It reduces sympathetic stimulation, so I am less anxious and moody, my muscles are relaxed instead of tense, and I am less shaky (usually) I don't need to sleep as long. Cons so far: My heart rate is higher now when standing and I don't tolerate being upright as well. (Worsened my OI) My doctor has asked me to combine this medication with a beta blocker to reduce my heart rate, but I am scared to try it just yet. I have the feeling that it would cause me to have more low BP spells (I have those as well).

I've fought really hard, but it all came crashing down anyway. Because what I was fighting against was reality. Wanting something with all your heart isn't enough. When want you want is fundamentally outside your capabilities. It is so so difficult to find and accept your own limits.

Thanks for the article. I am a mother and beginning graduate student so I appreciate it. Today was really rough and I even considered dropping out of school altogether. To use an analogy from the article, many times it feels like I run out of "spoons" when I still need to get things done.

Hi, I also had a weird reaction to the flashing lights of the EEG. (See post about eeg and convulsions). It was as if it was setting off my sympathetic response so badly that my heart raced, I started shaking, then went into convulsions. It was weird to experience the same response I had to the tilt table test. Doc said brainwaves are normal.

I forgot to mention that if you have Ehlers Danlos/Joint Hypermobility, pregnancy can cause additional problems. Your joints loosen during pregnancy to prepare for birth, so you can have increased joint pain and instability. For me it was my hips. Also, there is an increased risk of hemorrhage or organ rupture (mostly a concern with Vascular EDS, but it can happen with other types, too.)

Hi Lisalou, My son William is 18 months old now. He is a wonderful little boy who has enriched our lives with his exuberance and desire to learn about everything. But, the process of having him and keeping up with him has been challenging for me. I learned I was pregnant when I began having food aversions and nausea. It progressed to full-blown "morning" sickness. I put morning in quotations because it was all day long. I vomited every day and had trouble eating and my POTS began to worsen. I had to quit my part time job. This phase lasted for about 3 months. The vomiting subsided during the 2nd trimester, but I still had pretty bad weakness and orthostatic intolerance issues, so I had to return to using a wheelchair. Blood work showed that I was anemic, which is common in pregnant women. I was put on a prescription iron supplement and that really helped. (Anemia worsens POTS symptoms). Well, the third trimester that everyone complains about was much better. During this time your blood volume increases dramatically to help support the baby. I felt almost normal and almost wished I could be in the third trimester all the time. My labor and delivery were not affected by my medical conditions, except that I had real trouble catching my breath (maybe exercise intolerance, or is it normal?). William was born about 20 hours after I entered the hospital. I was blessed to have a normal, uncomplicated vaginal birth and a healthy child. During the postpartum period the hormones and blood volume gradually return to normal, which caused some trouble for me. Also, newborns wake up often during the night for feeding, so you will be sleep-deprived. William is a toddler now, which has its own challenges. He has so much energy, it is hard for me to keep up with him! My husband helps when I cannot. But, at least he is sleeping through the night. I hope this gives you an idea of what can happen! IceLizard

I have had these, too. Strange feeling. I found the phenomenon mentioned on this Mitral Valve Prolapse site : http://www.mvprolapse.com/symptoms_testing.php

My experience: My old chiropractor also said I had a straightening of my curve that was pinching my spinal cord. So, I let him adjust my neck. But the adjustment made me feel so dizzy and like I was on the verge of losing consciousness. It frightened me. It also increased my pain. So, instead I went to see a rheumatologist who disregarded what the chiropractor had said and told me my neck was just fine. I am confused about who is right, but I do know that adjustments of the neck can be dangerous: they can cause damage and even vertebral artery dissections. Be careful.

My history in brief: Symptoms began in childhood around 4th grade. Worsened around age 12 and began having migraines. I had dysautonomia and tremor problems throughout high school, but no one had diagnosed me yet. One doctor mentioned that my catecholamines were too high. I thought it could be hypoglycemia since I had symptoms around eating, but that was disproven. Still, I really restricted my carbohydrate intake because starches and sugar make me feel worse. In 2004 I began college and had no appetite. Eating made me feel worse. In 2005 I had a what felt like the flu and my heart was just racing. I was hospitalized for a week, but no one could tell me what was wrong. They even tried to make me walk down the hall and when I collapsed told me I was faking! Then I went to an electrophysiologist (I am wheelchair bound at this point) and he stood me up and checked my heart rate. Then he said I had POTS, but that there was not much you could do about it. Later that year I would see other physicians and have tilt table tests done (result: POTS and fainting due to sudden drop in BP). I was fortunate enough to see Dr. Blair Grubb in Ohio who said I had POTS because of EDS III. I was put on a new medication that helped some : Cymbalta. During this time I was very ill and could not walk almost any distance. I had trouble eating anything. I became very thin and weak. But, I was able to improve with additional food, medication and exercises that I did mostly in bed. I was mostly bed or wheelchair-bound for almost a year, though. In 2006 I went back to college to get a degree in math. I had episodes of passing out and convulsing about 3 times a week on campus. I got to know the EMTs pretty well. Despite the challenges, I was able to graduate with honors from the mathematics program in 2010. (I had lots of W's on my transcript, though). Also I got married during this time. For 2 years I worked as a part time math tutor. I have never been able to work a full-time job for very long, but I could handle this. I worked partly from home (as an online tutor), and partly with clients. But, I did not make much money and I wanted a little more of a career, so I applied and entered a PhD program in Applied Mathematics. I am in this program now. I have an office and a soft mat to lay down on which I use when I am really not feeling well. Lately I have been showing signs of hyperadrenergic POTS (high blood pressure and high heart rate), so my doctor put me on Clonidine. I was having trouble finding the right dosage with the pill form and since it was short-acting I kept experiencing ups and downs. Yesterday my doc agreed to let me try the extended release version (a patch). I started it last night and I feel so much better today. A little sedated, but I am not shaky, my heart rate is still a little high, but not as bad, and I feel relaxed. It's too soon to tell, but I may have found something that really helps me feel normal! Sorry if this is too long... IceLizard

Heart rate is lower 110-125 standing and I am no longer shaky, but I am too sedated to work I am experimenting with the dose right now, and I think I will go for a lower dose next time.