IceLizard

Sometimes it's really hard to tell when you are going to pass out and when you can push through. I passed out without much warning in my pharmacy yesterday and gave everyone a scare. I was able to convince everyone I did not need to go to the hospital (once I could speak), then my husband brought me home where I watched my fish until I fell asleep. Get some good rest when you can!

I am on Librium for my tremors. It's a small enough dose that it does not knock me out, mostly just keeps me from being shaky. Valium and Librium are both Benzodiazepines which have anti-convulsant properties.

Based on what you have said, you might consider being checked for EDS, by Dr. Grubb or by another EDS knowledgeable doctor. Migraines and chronic nausea are also common in EDS patients. If you like, you can try going over the the Ehler Danlos National Foundation forums for more information here: http://www.ednf.org/message-boards I have medicines that lower my heart rate, raise my blood pressure, and medicines that lower my blood pressure and calm my nervous system when I need that instead. I was also prescribed Librium to calm the tremors, and I also have something for migraines and nausea. Taken all together it is a difficult balancing act, but I am grateful that I have the ability to treat symptoms as they arise. I am sorry your doctors have not given you anything to improve how you feel, they seem dismissive as long as you are conscious. Do you currently have a physician who will listen to you and is interesting in helping you feel better?

Becia,do you have problems with any of your other joints or generalized pain? Dislocations where you have to "pop" the joint back in are common in EDS patients. In fact, multiple dislocations in the same joint is one of the minor criteria for diagnosing EDS. There is something you can do to test to see if you might have EDS. You can check the hypermobility of your joints on your own using the Beighton score. A high Beighton score plus other criteria (see 2nd link) can indicate you have EDS. http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/ http://media-cache-ec0.pinimg.com/originals/32/cb/22/32cb22e5c8a2c90057e61c8fcc316aa5.jpg I did not know I had this until I went to see Dr. Blair Grubb for POTS and to my surprise he started pulling on my joints. He suspected EDS based on my history of dysautonomia and joint pain.

Hi, I think Katybug meant "finding a more specialized physician." The mre appears to be a typo. If you are are progressing too quickly and the dysautonomia doctors on the dinet.org list take too long to see, you might try scheduling a phone consultation with Dr. Svetlana Blitshteyn, She is a neurologist specializing in dysautonomia who has good patient reviews. She can give you and your physicians advice about what to do next (for a fee, of course). See here: http://drblitshteyn.com/ I know others have used her before, you might ask around and see about other peoples' experiences. I considered doing a phone consult, but I just don't have the money right now and I am currently working with excellent local doctors that insurance covers. Best wishes!

Did they give you anything for the episodes of high blood pressure and tremors? I have tried several different medications for this problem that do help. Just ask if you want to know.

Hello Becia, Kudos to you and your new life plan and exercise regimen! I know that if you keep exercising, resting, and learning to take proper care of yourself with this condition you will make improvements. FYI it is best to start exercising in the recumbent position (i.e. recumbent bikes, rowing machines, weights, ect.) until you can handle being upright more. Give yourself some time to adjust and improve, then if you are still not satisfied with your level of functionality, try going to doctors again. I can't believe they didn't find out something useful after all that you went through. That must be so frustrating! Just curious, did they check you for Ehlers Danlos syndrome? I ask because you keep having problems with your hip and all of this dysautonomia stuff is common with EDS patients. You are intelligent, persistent, and creative. I know you can succeed in reclaiming parts of your old life and discovering new things in life.

Is it possible to cut it in into small pieces and try just a small piece first? Then you can try increasing your dose slowly if you have no bad effects.

I have vivid dreams, night sweats usually accompany them. I also have night terrors where I will jolt up in bed or cry out. On a few occasions I have actually injured myself during night terror attacks when I jump out of the bed. I am fully asleep when this happens. Sometimes I do have pleasant dreams though and sleep well during these times.

Mine says: "POTS and syncope. Do not make me sit or stand up before ready." Too many times EMTs or others try to get me up too soon and I pass out again and have convulsions. On the back is my husband's phone #.

I was in the hospital for about 6 days. I had episodes of blood pressure drops and spikes, and episodes of very high heart rate and convulsions several times a day. I was so bad that I had the heart rate spikes and convulsions even while laying down and sometimes waking me from sleep. I responded a little to IV fluids and I responded very badly to Inderal. I could not stand up at all except maybe twice while I was there. Sitting up was a challenge. After coming home from the hospital, my son was in daycare and my husband at work. The first 2 days I still could not stand up straight without a really fast heart rate and collapse, so I moved around bent over. I did not set out to sleep so much, I was just so exhausted. By the third day I was sleeping more like 14 hours instead of 20 and I was able to walk upright a little. I usually sleep from 10 to 12 hours. Requiring more sleep is not uncommon with dysautonomia. Dr Thompson himself (The Florida doc with POTS) says he sleeps 14 hours during flare ups. I am not sure why. I am more "normal" now. There are times when I have I do not have the POTS heart rate increase with standing and there are times when I do. But, it is nowhere near as bad as during the flare. I still cannot do stairs or upright exercise, though. I have a recumbent trike to help me with exercise.

Sometimes I do not fit the strict definition of POTS: my heart rate and bp will be OK going from sitting to standing. But, I will also have times when it goes crazy- 200 bpm from climbing stairs or hills or from exercise and I have to stop before I have convulsions. I have had the effect of the heart speeding up when I turn over, too, but that has gone away now for some reason. When I was hospitalized, the tiniest things would set it off and I was constantly monitored via a Holter monitor or similar device. It showed that my heart rate went tachycardic sometimes in response to sitting or shifting in bed, and at that time especially to trying to stand up. This monitoring gave the doctors a picture of what my heart rate was doing during various "activities," and made sure that my heart rhythm was normal besides being too fast. With a wearable Holter monitor you are supposed to keep a diary of activities you are engaged in and how you feel so they can correlate this information to your heart rate. At least that is what I had to do when I wore one. It is supposed to give doctors a better picture of what is going on with your daily heart rhythms. What really helped stabilize me was lots and lots of sleep. I am talking 20 hours a day when I got back from the hospital. I would wake up, eat something, practice moving around a little, then go back to bed.

I have had these so badly that they conclude with what looks like seizures with a heart rate near 200 bpm. I have to avoid stress that can bring them on, like for example, trying to about a normal life instead of resting all day (only half-joking). I am shaky in the mornings especially, so I take Librium, which seems to be helping. Clonidine helped too but I had side effects from it. I am concerned about being on the Librium because it is a benzodiazepine, so I am seeing my doc to look for alternatives. I have reactions to non-selective beta blockers so I can't really use them. Sometimes Metoprolol (a selective beta blocker) can help with my heart rate. I think there is another medication called alpha-methyldopa that is supposed to help hyper-POTS patients. Hyper in this case referring to the hyperadrenergic state. (Hyperadrengeric = panic, high heart rate, high bp, and other symptoms of sympathetic nervous system over activation.) This site has more info on Hyper-POTS if you are interested. http://stoppotsvirginia.blogspot.com/2012/02/decoding-hyperadrenergic-pots-how-to.html#.UzCKeIWf0dV I am currently investigating mast-cell disorders, because they are associated with Hyper-POTS and low blood pressure symptoms. I hope you find something that will work for you.

Hi Freaked, What you may need is a med that reduces your adrenaline response only temporarily, since you have low bp at other times. Clonidine or a short-acting beta blocker have helped me in the past during these attacks, but, yes you need to bring it up with your doctor. Just something to think about. I am seeing a Psychiatrist, too because I am on Librium, Cymbalta, and Paxil and I need help managing these psychoactive meds. Nothing to be ashamed of. Too bad the autonomic nervous system doesn't have its own specialist.

Hi Becia, I know you have gone through a lot and must be so, so tired. I hope these tests give you some answers. After all the trouble they have put you through, you deserve it. (And no, I did not know there were 2 types of tilt table tests, thanks for the info ) Best wishes!

Hi Freaked, I was given Clonidine to help with this type of attack. Clonidine reduces blood pressure and in general is calming, but it is not a Benzodiazepine. It is usually prescribed for high blood pressure. Short acting beta blockers may also help. They are not addictive and they help prevent the action of adrenaline on certain receptors, thus relieving panic and anxiety and reducing blood pressure and heart rate. This type of attack reminds me of pheochromocytoma. See here: http://en.wikipedia.org/wiki/Pheochromocytoma I was tested for this and found to be negative. I have found that sometimes I will feel over simulated and anxious before eating, then relaxed after eating. I am not sure why, though. I do know that skipping meals is a trigger and that I should never allow myself to become too hungry, so I eat throughout the day.

Hi Freaked and thanks for letting us know that you are OK. Did the hospital try taking your readings while standing you up? My readings can be normal lying down but can become dramatically different when standing. Can your cardiologist or GP explain more about what is happening with you to your parents? Do you think they would listen?

I had to live with my boyfriend for a while hidden in his dorm room with supplies and a chamberpot so I wouldn't have to live at home. I've gone through similar things and I just hope you can find a way out of this...

You may need that phone if you become even more ill and have to go to the hospital or if you need to call your Cardiologist about the BP readings. Do you feel like you are in any danger? Are you being held at home against your will without means of communication or leaving? Please explain the situation more. I will call protective services or the police for you if you ask me to.

I am very sorry you are in such a difficult place. Those BP readings are not normal and even if they were they should be treating you better than that. Low pulse pressure coupled with tachycardia can be an indicator of hypovolemia (low blood volume) which many of us have and is treatable. I am on Florinef for this, but I see it was not successful in your case? Is there anyone else you can live with until they come to their senses (other relatives, friends)? Can you get a phone back? You may need it and they have no right to take it away. My mom was the opposite, she panicked whenever I was sick and said I was going to die. If they keep mistreating you you may consider calling protective services on them. This is just not right.

I'm sorry Freaked. Two months ago I was in the hospital for 6 days with HR going up to 200 randomly, convulsions, spikes and dips of blood pressure, but no fever. They had trouble treating me as everything they did made me feel worse. At home it seemed to resolve itself somewhat after several days of like 20 hours of sleep. I was given a Benzodiazepine called Librium which helps with the anxiety and convulsions. I mostly feel better on it, but my thinking is slower. It helps calm the central nervous system. It is my understanding that since the autonomic nervous system also regulates temperature that it is not uncommon to have slightly high or low temperatures. I found a discussion about this here: http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/low-grade-fever-on-and-offrelated-to-POTS/show/1354971 I hope you can get out of this rut soon!

Sorry to hear this. There was a time when I did not have them, then all of the sudden they started occurring. Have you noticed any patterns? Any warning signs they will occur? Any triggers? What are your heart rate and blood pressure doing? Mine sometimes occur in clusters and I have to stay at home and rest and take it very easy or it will happen again. I tend to be very worn out afterwards anyway.

Hi Mamawithpots, I was pregnant with my son two years ago and my POTS worsened during pregnancy. It turned out I was anemic and that was making it worse. Once that was corrected I felt much better. Towards the very end of pregnancy my POTS improved, I assume because I had so much extra blood for the baby. You may ask about IV fluids during delivery because as you know you are not supposed to have anything by mouth. I had a normal vaginal delivery that was augmented with Pitocin because my contractions stalled. I have exercise intolerance and labor was difficult because I felt I could not catch my breath and get enough oxygen. What really helped was O2 given during delivery. It calms you and helps you get enough O2 even when your circulation is off. Post partum was very difficult I assume because I lost blood volume and my hormones changed. I took it easy and rested when my baby rested. I did eventually return to my "normal," but it took some months. POTS can be triggered by pregnancy and in some cases can resolve later. This article may help put some fears to rest: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2894719/ Happy pregnancy

That amount of weakness appearing so quickly to me suggests it could be nerve problem. Do you have a GP or main doctor you can ask about this? He may be able to refer you in the right direction. Just explain it to him like you have to us.

My mother experienced the same thing. She called it "muscle wasting." She used to be so strong and fit, but she got progressively weaker and her muscles lost their tone. I think it may have to do with the Ehlers Danlos syndrome, but I don't know for sure. I haven't gotten to that stage yet, but if I try to push myself when exercising I always regret it. I am doing very light exercising and try to do nothing that makes me feel ill. I collapse if I try to do a "normal" workout. I am sorry you are having such a rough time and I hope you can find some relief soon.