deeplyset

My symptoms started to appear immediately following a car accident where I hit the lower left hand side of the back of my head. My brain was sheared and there may have been some bleeding but that did not take a MRI just a month after the accident, so all they found was iron deposits. I began increasing worst until I began collasing and could not sit up 4 months later. Ever since then (2 years) I have been really sick with what they just diagnosed as POTS. Prior to that they called my problem Post Concussion Syndrome because of the shearing on my brain. Even after the shearing healed they continued calling it because of the scarring that remained on the MRI's. But now that they know that it has been POTS my question is what is the relationship between POTS and Car accidents. I know that car accidents can be stressors but I was completly healthy before this happened. WHERE CAN I FIND INFORMATION about the relationship between the two? I have a car case because I was not at fault and I can't get a lawyer to take the case on even the head injury or back injury because they are saying the POTS is complicating everything???? My health insurance is also refusing to pay for multiple bills because they say that the accident is at fault for the POTS. I DON'T understand EITHER WAY!!!!

Ithomas521 - I totaly feel you!! I just came back from the mayo clinic and I talk to a neurophysc doc who told me that my problem was phsycology and if I would just start to exercise 30 minutes a day then I would be fine. The thing that really upset me was that she told me that my TESTS came back normal she was 2nd to last appoint of the visit. This was after 2 years of looking for an answer to what was wrong. I was so upset after the appointment that I almost left to drive the 1000 miles home and not go to the final appointment. But I decide to go, and when I got to the next appoint the doctor out of the blue told me the result of muiltiple other tests (ie the tilt table, the atonomic test, blood test, etc.) that came back abnormal. She was a GI doctor. I was really confused then. I went home and I got a call a week or so later from the Mayo clinic asking me to come back for further testing then they diagnosed me with POTS and well as other stuff! I was really upset with that doctor, I'm yet to recieve her report. I think some people make up their mind about you and are so press to prove their point that they don't care what it costs someone else. It's really sad.

The drug is called Effexor XR. I committed to just trying it for a month. She has been really persistant that I need to just try it. I'm thinking short term... I hope to doesn't mean long because I'm already uncomfortable with it. I took the first does yesterday and felt like I could crawl out of my skin. She said that INCREASED anxiety for the first week is normal. Ramakentest - my doctor not knowing much about POTS kinda took the approach that you are saying... She said that if my body is not being able to handle things itself and therefore allowing me to easily go into overdrive then I should treat it just like I treat a thyriod. Helping it out in a sense and giving it a boost. She doesn't view it as NORMAL for POTS though she just thinks that I if we can help any aspect of the symptoms by "fixing" them we should. That makes me uncomfortable in a way because I'm concerned it will mask important things my body is trying to tell me... Calypso - I would like to hear more about your experience with this drug... Collasping is what happens to me mainly and if this could help that in a sense I'm very interested... I have seen a phsycologist for over a year and dealt with everything I could image. Every time I go into a mild depression I go in and out of it in less then a month. I have my days of up and down, happy and sad, over all I would say I'm doing pretty good concerning the circumstances. The main problem is the Anxiety, occasional Panic Attacks, and inability to manage stress. Which is turn cause breathing problems on the already hard time with the tachycardia. Suggestions??? What does SSRI stand for??? Thank you all for your help and support.

My doctor has been pushing me to take Depression/Anxiety medication for a really long time. Not that she found out that I have POTS she is even more adamant about it because of the difficultly I am unable to manage any amount of STRESS very well. Which in turn threws me into Anxiety and Panic attacks and of course makes it hard to breathe on the already difficult time breathing. Because of POTS, coming on Suddenly I have found that which all the life changes it I have come in and out of mild depression also. SO, my question is are there other people out their that have experienced this and is taking medication to help okay? Are there cautions I should watch out for? Are there other options? If so, what? How important (among all the other stuff) is this?

Thank you all for the help and suggestions... Poohbear- I think your right it is just really shallow breathing... I talked to my doctor about the oxygen and she said that she didn't think I needed it and suggested I breathe into a bag... I've done this before. It takes forever but I guess I'll keep doing that... rqt9191 - I was taking Mestinon but it made me really weak so the doctor stopped it. So now I'm just taking other stuff... You know for migraines, back pain, nausea, gastritis... Nothing right now for the POTS. Suggestions? I've tried Florinef and Midodrine, neither of them really helped. I looked at the www.potsplace.com and the closest doctor is 8 hours away from me... Suggestions??? I'm really overwhelmed by that. I've been so encouraged and even feel empowered in a way by all the information I've gained by reading this site... It has helped a lot...

Since I've been asymetic for so long my doctors, I guess, have just stopped looking at those list . I didn't have any problems other then swelling and weight gain. I didn't see any change in my POTS symptoms unfortunately. I couldn't image handling the MG and POTS at the same time... I'm Blessed. The mestinon for me definitely was a bad experience. The drifting out of consciousness thing was a first for me. AND it really did scare me. Right now, my doctors aren't trying anything with me... Just salt and water... Ibprofen seems to help me a lot but unfortunately I am getting the side effects of it. What are they using on you for treatment, if you don't mind sharing? I mean coming from a Myasthenic and POTS patient it may be helpful with me...

I was diagnosic with myasthenia Gravis when I was 12 and was really sick for about 2-3 years. I have been asymetic for about 8 years now. When I got diagnosic with POTS (beginning of this month). They put me on Mestinon again. (I had already tried Florinef and Midodrine when they didn't know what was wrong with no relief of symptoms). I began getting really weak and all the POTS symptoms started acting up... I got to the point with I couldn't even sit up and bearly able to breathe laying down because I was so weak and going in and out of consicousness laying down and I was having to be reminding to breathe. ANYWAY to say the least. They told me to STOP the mestinon and I'm feeling a lot better. I can sit up without a problem now I'm working on standing and taking a few steps again (still having time with that but it's coming slowly but surely). But ALL that TO SAY - At least I know I'm good to GO on the Myasthenia and I really appreciate you passing the info along! Thanks Ariella!

Danelle, I'm really sorry. I know breathing problems really ****. Hang in there.

I've been having these for a long time. Same thing your talking about. Twitching, Numbing on the right sight of my face and sometimes body then loss of ability to speak because my tongue swells up they usually will last for about 20 minutes then stop... Sometimes they happen after I collapses and sometimes they happen when I'm being over simulated. My doctors that they were a calcium deficiency at first told me to drink milk that didn't work. They did a blood test of calcium and my electrolytes in my body to rule both of those out. So when they kept happening they did a sleep deprived EEG it came back normal except for peaks that are often seen on people who are having severe Migraines. They said it is probably related to that. I talked to a medical friend and he told me that tell sound to him like a imbalance is the body related to the brain and breathing. He told me to get and plastic or paper bag and breathe into it. To try to balance to CO2 in my body. I don't know why but it usually brings my out of it in about 5-10 minutes less time. It's the only thing I've found that helps... It might help you too. I'm sorry. My left hand will also clamp and turn in (paralyzed so I can't use it when it gets really bad)... do you ever experience that??

I asked the doctor about sleep apena before because I have a lot of trouble breathing when i'm sleeping too. I'll wake up gasping sometimes. They asked me some questions and said it was anexity. I've never just fallen asleep that I know of in regard to narcolepsy. Thanks for your help Poorbear

The breathing is like I'm so weak unless someone reminds me to breathe I'm not breathing. Which I know sounds crazy. Other symptoms: tilt table- collapsed at less than 7 mins. (tachycardia) Heart rate went up to 130 beats per min. (this is the 2nd tilt table last one my heart in 10 mins went to 153) blood pressue wasn't change very much, slowing of the bowels, general weakness, inability to handle heat or coldness (any extreme with anything, noise, people, evornments), slightly anemic, low blood pressure, high blood pressures, lightheadness, DIZZINESS, cold hands, difficulty swolling, abnormal atonomic test, chronic mirgrines, anexity, constipation/diarreha, numbness/tingling, pain all over my body to any pressure (don't ask me what they is), also right after I collapse I can't speak for about a minute or so then when I could back to me speech is slurred... these are just some of the symptoms. I have a history of Myastenia Gravis but I have been asymatic for 8 years. So I know the difference in the breathing and swolling because I've gone in crisis with that before. I'm 23 now.

I just got diagnosed with POTS but I've been sick with it for about 2 years. The worst I get is where I can't sit up without fainting/passing/collasping/going lopping things happing. I'm at that stage again and this time I'm going in and out of consiousness and not breathing even when I'm laying falt. The last two times it got this bad they hospitalized me (because we didn't know what was wrong). I'm frustrated because none of my doctors even really know what POTS is. So it's like the blind leading the blind. I'm not sure what to do, I don't know what is really even happening. I'm just so sick. Is this normal? I'm getting a little better each day since I stopped a new medicine they were trying mestinon. But the progress is really slow and anything is throwing me back flat... I'm just concerned, and don't know who else to ask.

Hey Gittel, I just joined too! My doctors are looking into POTS as a diagnostic possiblity for me also... I won't know for sure till June though! Everyone has been really helpful, supportive and knowledgable so far for me I'm sure you'll love it.

Thank you all so much! This is encouraging! And helpful! - I return to the Mayo Clinic in June for a second evaluation. I will look over the website and the different discussions. I've already learned a lot by doing that... I'm hopeful that there is hope out there. I have never fainted (where I lose complete consiousness) but I collaspe ALL THE TIME two to three time or more a day. And it takes a long time to recover they have tried blood pressure medicine to raise my blood pressure but those haven't work. I wrote down the meds (carnitor and Proamatine - thanks). It's been discouraging with the Conversion thing but I'm hopeful now that they might actually find something. I'm trying to get that THICK SKIN. They are still looking into Addision Diease also because I guess my endocrine stuff is all whack out. Anyone know about that??? I read it could mimic POTS, what are the differences? Can you have both? Mightymouse - I have a lot of these symptoms "weakness on the left side, spasms, migraines, loss of balance, swallowing problems, and pain radiating down my arms." It will be insteresting to see your page. Thank you. Does anyone know why it would be really HARD TO BREATH sometimes? My finger nails turn purple and my lips go numb. My CO2 levels are always low on my blood tests. NONE of my doctors have looked at it and they say that it just because I have anexity. I've never had anexity like this before all this started. ANYWAY... I appreciate all of your help.

My doctors think I may have POTS. I've been sick for about 2 years since a car accident where I hit my head (Concussion, chronic Migraines). I began to have werid symptoms but began suddenly collasping about 4 months after the accident. I lose complete control of my body (arms, legs, neck), my eyes roll, I am really weak and I can't speak for about 1 minute or so. When I come back my speech is slurred. I can take anywhere from 45 minutes to days to fully recover to my new "normal" which since that first collaspe is now I can't walk or remain upright for more then 10 minutes MAX without the collasping thing happening. I never lose complete consciousness but I'm loopy. They have done 2 tilt tables and they have to stop them at about 7-10 minutes because I collasped, hypervinate, and my heart goes nuts. I just found out that it could be POTS. (After 2 years of trying, 2 hospitalizations, and now I'm being seen by the Mayo Clinic). I don't know much about it. And some of the Doctors have written it off as a Conversion Disorder, or simply Psychological. Do all POTS patients lose consicousness? Have any of you ever collasped like this? They have tested me over and over for seizures and that is not it. Any help would be so helpful...