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I was diagnosed by an epileptologist (a neurologist who specialises in epilepsy) with temporal lobe epilepsy. She used a 72 hour ambulatory EEG to diagnose me. I had mine done at home, doing the normal things I do during the day, but some people have it done in a hospital setting. There is also a 72 hour video EEG where you spend your time within range of a video recorder so they have a video of what is happening to you as well as the EEG. As Loonermom said, having someone video record your episodes would be really helpful to your doctor. Sounds to me like you need to see, at a minimum a neurologist, but one that specializes in epilepsy would be the most helpful.

Anyone have epilepsy, sphincter of oddi dysfunction or detrusor sphincter dysynergy ( urinary retention)? And who knew that others get shocking, electrical sensations. I get them all the time, and I thought I was the only one!

I have been seeing Dr Suleman for the last 8 years and he has made a huge difference in my life. He is a really kind man and really is concerned for his patients.

I'm 55

Dizzysillyak, you mentioned earlier that there was an inhaler that you took that lowered seizure threshold. Which inhaler is that?

I have peripheral neuropathy and it feels different in different parts of my body. In my legs it feels like a continuous tingling, pins and needles sensation. In my right arm it feels exactly like ou are describing.

I started having gall bladder pain in my mid 20's. An ultrasound showed no gall stones but a HIDA scan showed that my gall bladder was non-functioning (was not excreting bile) so I had my gall bladder removed. That was the beginning a long history of abdominal pain associated with elevated liver function tests. I was diagnosed with sphincter of oddi dysfunction and over the next three decades had five ERCPs and three sphincterotomies. I also have bad GERD. I had a pH study that showed I refluxed over 100 times in one day. I also have detrusor sphincter dysenergy resulting in urinary retention. It seemed to me that it was no coincidence that these sphincters were all under the control of the autonomic nervous system. When I first got diagnosed with POTS I tried on convince my doctor that these sphincter issues were all related to my dysautonomia. It was a hard sell but after 6 years he agrees with me that they are all related. In fact, when I started to have more sphincter of oddi pain he started me on Mestinon and it helped a great deal.

Can't function wihout Clonodine.

I can also say from personal experience that getting bite by a copperhead snake will also make your POTS symptoms worse. I got bit in Aug and am still having problems. Apparently the venom can stay in your tissues and cause your blood vessels to become very porous. Just what someone with POTS doesn't need is more venous pooling!

I need some advise related to this topic. I have been diagnosed with POTS as well as progressive polyneuropathy. My POTS is under good controll but the neuropathy continues to get worse, despite increasing doses of Lyrica. My neurologist has recommended that I see a another neurologist who specializes in neuromuscular diseases. I live near Dallas and have an insurance that many physicians won't take. She recommended a former colleague of hers that is the head of neurology at the University of Kansas. I noticed on the peripheral neuropathy link posted at the beginning of this thread that the University of Kansas is one of thier recommended peripheral neuropathy centers and they take my insurance. Does any one have an experience at that center or can anyone recommended someone that they had a good experience with.

I am currently 55 and was initially diagnosed with Inappropriate Sinus Tach 10 years ago. Five years ago as my symptoms got worse I was rediagnosed with POTS. I have gotten better but I believe it is just because I am now being appropriated treated with meds that work for me. I have also been very persistent about participating in an exerecise program-no matter how hard it can be. It's a constant battle and I feel that without meds my symptoms would reappear and I would be really disabled.

I have been diagnosed with temporal lobe epileps and am taking two anti seizures meds. Since taking these two meds my EEG has become normal and my POTS symptoms have improved.

Try to get an appointment with Dr Suleman. His office has the ability to give you IV fluids in his office.

Xopenex causes less tachycardia.

For me, vigorous exercise is key. I was on meds for several years which controlled my heart rate, but my blood pressure was low and I felt constantly fatigued and short of breath. I friend of mine teaches Zumba and she came to my house and encouraged me to try to dance some songs. She worked with me for a long time and now I am able to participate in vigorous classes. If I miss exercise I quickly begin to feel bad. It was really difficult to get started and i did crash often i kept working at it and it was well worth it.

I had a labral tear in my hip about 10 years ago. I had a hip arthroscopy with debridement of the labral tear. It is important to get an experienced surgeon bz while it is not an extremely invasive surgery, the hip joint is so tight it is difficult to work within the joint. Because I waited so long to have the surgery, I had developed a lot a weakness which resulted in a more prolonged recovery. But overall, it wasn't too bad. I've also had rotator cuff tears in both of my shoulders which both required surgery. I wonder how it's all related.

A pacemaker will only help you if you have problems with your heart rate dropping low. It will do nothing for the rest of the autonomic dysfunction that causes POTS symptoms. While the incision that is made to put the pacemaker in is pretty small, the risks of putting in a pacemaker are significant. So the cardiologist will only put one in if you meet specific criteria. The only way to know is to ask your cardiologist and if you still have concerns, get a second opinion.

I was diagnosed with POTS a couple years ago though I have had symptoms for years. Last year I went to see a neurologist for significant memory issues. As part of the neuro workup I had a 72 hour ambulatory EEG which showed temporal lobe epilepsy (TLE). If you do research on line you will find that TLE can cause autonomic dysfunction-among other things. When I started taking the anticonvulsant Keppra my POTS symptoms improved significantly. In fact, my autonomic specialist thinks the TLE is the cause of my POTS and I am his second patient that fits this pattern. My recommendation is to find a neurologist who specializes in epilepsy (an epileptologist).

Look up temporal lobe epilepsy, complex partial seizures and focal seizures on the internet. I have POTS and went to see a neurologist for memory issues. She did a regular EEG as well as a 72 hour ambulatory EEG which showed abnormal activity over my left temporal lobe. When I started taking anticonvulsants my POTS symptoms dramatically improved. While I have never had symptoms like you are describing, they sound a great deal like what I have read about with complex partial seizures. Hope you find an answer soon but please don't let doctors tell you that if your son was conscious during the episode, that he is not having seizures. While this is true with grand mal seizures, it is not true with partial/focal seizures. If you do not get the answers you want, please consider seeing an neurologist who specializes in seizures (an epileptologist).

It's important to know that when pills are made, the medication is not evenly distributed throughout the entire pill. If the pill is scored in half (has an indent throught the middle of the pill), then you can be assured that half the medication is put in each half of the pill. But if you cut the pill in thirds, there is no gaurantee that one third of the medication is in that third of the pill. One day you could be getting a small amount of medication and another day you could be getting a much larger amount of medication. Another approach is to increase the amount of medication you take much slower-maybe increasing the dose after a week. I take Clonodine and Zebeta to control my heartrate. Sometimes it makes my BP go low but I tolerate a little low BP better than I tolerate a high heart rate. Yesterday my BP dropped to 79/62 and I felt pretty bad but I just layed down, drank a bunch of water and within a half an hour or so my BP was up and I was able to carry on with my life. It's certainly not an ideal situation but for me it's better than having a heart rate of 160 all day long.

Dr Suleman is my doctor. It is easy to get an appointment with him. He has all the autonomic testing in his office so its easy to get all that arranged. He has a nutritionist and an exercise specialist that work in his office to help with necessary lifestyle changes. It's like one stop shopping. I have been working with him for a couple years and he continues to help me find solutions.

I have had POTS for several years now-being treated with Zebeta, Clonodine, lots of extra salt and water-with variable success. A year ago I went to a neurologist for neurologic complaints and after an abnormal 72 hour EEG, she told me that I had left temporal lobe epilepsy. When I started taking anti seizure meds (Keppra), my POTS symptoms improved dramatically. If you do some research on temporal lobe epilepsy, you will find that it can cause autonomic symptoms. My autonomic MD thinks my POTS is caused by the epilepsy. My neurologist is not as convinced. So I guess my point is that, some types of seizure activity can cause some of your symptoms. I suggest finding a good epileptologist. And do a web search for temporal lobe epilepsy and see if it seems to fit your symptoms. But the previous poster makes a good point about hypoglycemia causing your sympotoms. Good luck finding a solution to your symptoms.

I just got out of the hospital yesterday after having my 5th ERCP and 3rd sphincterotomy. I have gotten mild pancreatitis after each ERCP. Pancreatitis is a recognized but uncommon complication of ERCP. What's up with several of us having this complication? I'm curious what health problems caused everyone to require an ERCP. For myself, I have had a sphincter of oddi dysfunction for at least 20 years. Originally, when I started having pain, my doctor thought i was having a nonfunctioning gallbladder so I had it removed. After my surgery I started having intermittent severe pain (feels like someone is reaching under my rib cage and ripping out organs-the worse pain I could ever imagine). As it turns out, the sphincter that allows bile to drain in the small intestines goes into spasm and causes pain. There are some medications you can use to cause the sphincter to relax but they never worked for me. So every few years I have to have that sphincter cut to allow the bile to drain. I also have issue with other sphincters in my body. The sphincter between my esophagus and stomach don't work so I have really bad reflux. And the sphincter between my bladder and my urethral also doesn't work well so I get urinary retention. I have tried to get my autonomic specialist to believe that these are all related to my autonomic dysfunction but he will not commit to that idea.

I did anesthesia once on someone with Stiffman Syndrome-very rare syndrome indeed. I had a hard time finding any information on the anesthetic implications of your disease. The whole experience was very challenging. Glad to hear your meds are starting to help improve nour life.

I went to a neurologist about memory issues in addition to my POTS diagnosis. She did a full neuro workup complete with a 72 hour EEG. Turns out I have temporal lobe epilepsy. One of the manifestations of seizures in that area of the brain can be autonomic abnormalities. When I was started on anti-seizure meds my POTS symptoms improved dramatically. My autonomic specialist has started to send some of his POTS patients to my neurologist to see if they also have issues with epilepsy.