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Arizona Girl, How does the Glucofage make you feel? Do you have side effects from it? I think I had PCO, but it was never diagnosised. I had a hysterectomy at a young age. I have high test. levels even now though. I too have weight gain and it isn't diet related. Did your neurologist figure this out? How are you doing since your plasmaphereies? Do you feel any better?

masumeh, I thought the way you expressed yourself was very loving and kind. Your advice was very good and I found it to be very educational. Keep those good comments coming!!!!!

There are some excellent food sources for iron and probably won't make you as sick. Okra Black Strap Molasses Cream of Wheat Cereal

The electrical system test is the Tilt Table Test (TTT). I looked up your profile and couldn't tell where in the south you are. There are doctors in the south. If you look under this site into the doctors list, you can see some recommendations. I think most of us (as potsgirl indicated) has been to one of the larger diagnostic places. I personally, went to Mayo in AZ. But the one in Rochester is the most noted for Dysautonomia diagnosis. If you haven't gotten the new DVD from this site, it would be very helpful to you. One of the doctors featured in this is from Pensacola, FL. Since this is considered a rare illness, not too many doctors know about it or how to treat it. There is allot of trial and error. As for Ehlers Danlos, I was diagnosed at Mayo by a rheumatologist. They can test by physical symptoms and history. The hyper mobility type cannot be tested with genetics, but the other types can. Then they will send you to a genetics specialist. You will notice the stories that many of us have had in trying to get a diagnosis from doctors who don't know about the illness. It will save you allot of time and money to just go to a place that is noted for recognizing the issues and diagnosing it. The doctors mean well, but they really don't know how to treat you sometimes. You are dealing with such complete opposite issues sometimes within minutes. Your BP can go up or come down. Your pulse can be very high or hardly there. It is VERY complex. Now, at least you are probably on your way to putting the pieces of the puzzle together. They will start to fit and then you just have to figure out how to complete it with the care. I agree with one of the comments about you helping your daughter. I just figured out what was wrong and I'm now 50. I've been dealing with this since I was about 12 years old. It's so nice for her to have someone to advocate for her. One note, allot of the young ones do with age overcome this and have few problems as an adult. Here's hoping she is one of those!!!!!!!! Good Luck in your journey.

I forgot to ask, is she on any meds? Sometimes even simple things like allergery med. can affect a person with POTS adverserly. I've noticed that sometimes Benadryl will cause me to have tremors worse. My head will shake and so will the right side of my body. Other times the Benadryl will be beneficial. It's really hard when the autonomic nervous system is messed up. It can cause all kinds of symptoms and dysfunctions. We seem to be extremely sensitive to meds, foods, chemicals, and pain.

This is familiar to me. When I was younger, my vision started changing allot too. I was having to get new glasses every 4 to 6 months. Is she also very flexible? Is it easy for her neck and back to get out? Does she bruise easily? Does she sprain her ankles or is she a little clumsey? If the answer is yes to these, have a rhuematologist check her for Ehlers Danlos. I'm 50 and just found out that I have this. It is a gentic inherited connective tissue disorder. It can also cause dysautonomia. I have vascular involvement. Compression stockings and garments have helped me allot, because it helps to hold my tissues tight and keep joints from spreading and veins tighter in my legs. I also find Emergen C to be helpful. It helps because of the Vit c and the salt. My salt levels come back high on my blood work too. I've never been one to eat allot of salt. In fact, I have an aversion to it. So, when they told me to up my salt, it didn't seem right. One thing I have noticed is no matter how much I drink, it seems I always feel dehydrated. The water/fluid doesn't get into my cells right. Is this an issue with your daughter too? Maybe, this will be a direction to look. Keep us posted--we're all learning from one another.

I can't remember if I mentioned this to you or not. I have a friend who has Crohns and has found allot of relief with coconut oil and colostrum. Hardly has any issues any more. He also had some of this intestines removed and did the steriods. Now the two things are all he needs, other than watching his diet. Worth a try and not too expensive.

Yes, it gives allot of us headaches. I couldn't take it. I felt allot worse on it. I couldn't get past the headache part. I continued to take it at first, thinking the headache would go away. It did get better. But, then my BP started going too high. They pulled me off it. I recently found out that you can take Licorice Root instead of Florineff and it helps you hold onto your salt and fluids better. I'm new to using it, but can already tell a difference and NO side effects.

I think its both IBS and adhesions or maybe the endometreosis has returned. I still have my ovaries - but am wondering if I shouldnt have had them removed too. From what I understand women w/endometrosis that have a hysterectomy and leave their ovaries have a high chance that it will return because the ovaries are still producing hormones that drive the endometrosis (if there are any "seeds" left behind). Tara Okay, you diagnosised your pain. Yes, you are right. Everyone I've known that didn't have their ovaries removed during their hyst. with endo. Had to have a repeat surgery, usually within 2 years to have them removed. My surgeon said that what causes the worst pain, is the adhesions that pull on the ovaries. You will no mater, what get adhesions with any surgery. When they attach and pull the ovaries, every movement hurts. You could have had the endo reflare also. I didn't go on hormones for 5 months after my surgery, to make sure that they got all of it and to not have a return flare. I nearly lost my mind not having hormones. But, in the end it was worth it. After, I got through that, I don't have pain any more. My IBS got better too. I seldom have issues with my colon any more. I, too have the tumor on my liver. This developed after my hysterectomy. Years later. I don't understand that. Because they did say it was hormone related. I found that the only hormones I can tolerate are compounded natural ones, used transdermally. That way your liver doesn't have to process them so much. Since you still have your ovaries, you will need progesterone cream also. This will also help balance the too high estrogen. It may even get rid of the endometrosis. I wish I had learned about this before my surgery and tried this. But once you have the adhesions on the ovaries, I think about the only thing that will get you out of pain is their removal. There is a book by Johnathan Wright about natural hormone creams. Also there are two books "What your doctor may not tell you about (1) Premenapause ,(2)Menapause. Read both of these. I think the Pre one has more info for helping you understand what's going on. But both are necessary for clarification and understanding of what to do to balance out. I've found Red Clover helps me with the hot flashes and menapause symptoms the best of any thing I've used. I also use Estriol cream to help with vaganial atrophy and to keep my bones stronger. It also helps prevent breast cancer. Since there are 3 types of estrogen. Estriodol is the main one most people take, but in Europe, they only use estriol. If you can get away with that one only, you will be less likely to have any other issues with the endo or cancers etc. Estriodol is the one that is too high in endom. also the one that causes the liver tumor. Estrone is the other estrogen and is found in fat tissue. I have enough fat and don't need any more estrogen from that either. It is also a relatively dangereous estrogen. Since my complete hysterectomy, I hardly have any issues with pain either abdominal or colon. My IBS got so much better too. Hope this is helpful. I remember THAT pain and it is almost unbearable. I had a friend who didn't listen to me when I told her to let them take out everything. It was less than a year and she was back in. It took awhile to get her hormones balanced later, but she too was out of pain. She tried to stay off of everything for a few months too. I'm serious when I say you feel like you'll lose your mind being so young and not having the hormones, but I guarantee you, you don't want the endom. back. IF you decide to do this, make sure your husband knows what a ride you are both in for. The crying jags, hot flashes, mood swings, etc. I thankfully have a very supportive husband. We've been through allot in the last 30 years, but have managed to remain best friends. He's wonderful!!!!! Good Luck!!! One thing that has kept me moving ahead, is knowing other people have been through exactly what I have and they managed to survive and come through it. If one other person can do it. I can do it, I'm that determined. Hang In There---you're not alone.

Tara Lynn Do you feel you'r pain is related to your IBS or hysterectomy? Did they take your ovaries too? More later, I'll wait on your answers.

I can't take melatonion. It makes me crazy. I keep waking, sort of with weird feelings. When I sleep my BP drops out and I think melatonion makes it worse. One thing that I have found helps is dye free Benadryl. It has to be the dye free one. Also, recently added a Tagament to it. Last night, I slept like a baby and didn't wake up until morning. When I took it, I was having a horrible POTS spell. I told my husband I thought I was having a reaction to something I ate. So we decided to experiment. It made a HUGE difference. My POTS, BP and Pulse settled out and got less up and down. Because it was later in the day, I also slept really well. Someone else ever tried this? Did it work for you?

Hi Tara, Welcome to our support line!!!!! You will really enjoy being here. I have learned so much in the short time I've been here. It is so nice to be able to talk to other people who KNOW what you're talking about. It sounds like you've been through allot. It is so good that you FINALLY got your correct diagnosis. There is allot of trial and error and many years of searching for all of us here. It sounds like you are doing better on your meds and have now found doctors who are helping you. I too had a complete hysterectomy at age 36. For some reason issues like this go along with POTS. I had endometrosis and a ruptured appendix. My last abdominal surgery was my 8th. I'm hoping for NO MORE. I think hormones play a part in this thing. Advil and Tylenol can cause ab. pains. You may need to swith over to some natural form (Ginger and Tumeric). IBS is something else we have in common. I'm REALLY, REALLY afraid of tylenol. (Liver issues.) I've found that a muscle relxr. is the best thing for this. I use Bentyl. It's real mild and seems to help with the POTS issues too. The cramps that you get with IBS are greatly relieved with this. Also colon massage, that you can do helps. Sometimes Lemon Zinger Tea, or Chamomile helps me too. It's been suggested to me to try the Propranal (sp) with the Florinef. The Florinef gave me real bad headaches and elevated my BP too much. Other beta blockers caused my BP to go too low. I felt better without either of them. I've read that Propranal also has some anti-anxiety features. I feel I have the adrenal issues with my POTS and I really think that particular BB would probably be beneficial. What strength do you use of each of these? Welcome here. We'll enjoy talking to you.

Maxine, I can't stress to you enough about the cortisol support. It really makes a difference in how your body responds to stress and whether or not you'll have POTS issues. Note: an earilier post about paradox reactions. I too, paradox to many meds. I agree with an earlier post that it may be a good idea to support the cortisol before the prep. The prep is a bad thing to have to go through. That to me, is the worst part of the whole thing. It does help to put the solution in some sort of masking drink. Hope all goes well for you.

I have paradox reactions to all kinds of meds. I don't know why this happens, but I think it's pretty common with us POTS people. Valium sends me through the wall and over it and into it etc. I also react to pain meds that way. They gave me dulauded and I felt like I was going to crawl out of my skin. It gave me a severe panic reaction as did Zofran (anti naseau). They then gave me Ativan and it calmed everything down. Ativan is basically in the valium family, but I could use it. Every ones body is so different, what works for one won't work for another.

So are they increasing or decreasing your immune system? (I know, this question is because of ignorance.) One person here, is decreasing her immune system with plasmapherese. I haven't heard how this is working for her. If the NSAIDS increase the inflammation, what do you do? I thought NSAIDS and aspirin was supposed to decrease inflammation. I guess, I'm not totally understanding your DX. For the life of me I can't figure out what ME is. Can you clarify a little more. I think what you have to say is very relative for all of us. I, just need to understand it better.

I too have EDS and POTS. The symptoms are the same as yours. One thing that I've found to be really helpful is full body compression. Also keeping my salt up and hydration. I've recently started using Licorice Root instead of Florinef. It is helping me to hold on to my fluids better. I had the same type of doctor, with the arrogance and opinions. There is a site on the internet that you can rate a doctor and put your experience in there to warn others about them. Even though I wrote a letter to this doctor and told the "CORRECT" diagnosis. She didn't believe it and stuck to her ignorant arrogance. Some will not be proven wrong. It damages there reputation of grandur. Good Luck!!!! You've got it figured out now. Your on the road with the rest of us. We're all trying to get answers together.

I have low cortisol too. Whenever I have any kind of surgery or stressful procedures done, they give me cortisol IV. It helps to support the adrenals and allow you to be able to tolderate the stress better so you don't crash. Your doctor should be able to write a note to the GI doctor and he can do it prior to you colonoscopy. When I had my last, they used Florinol. I think that's what they called it. It's in the Demoral family but without as many side effects. I did fine with it.

Mine does this too. It is really scarry. My mother in law, who is a nurse, says it is very dangereous. Because your heart is almost at a stand still. There is supposed to be a beat then a rest. When they both are the same or close to it. Not good, not at all good. Make sure your doc. knows you do this.

Hopeful Lady, Just keep in mind that there is allot of trial and error that you have to go through when it comes to the meds. You will have to play around with dosages and different kinds. What works for one person, won't work for another. Don't give up in trying. Some of us have much worse numbers. Me, personally--so far, I'm not finding a medicine that is working. I've known for about 2 years what the issue was. But, I've had it since I was about 12 years old and I'm now 50. I've been to soooooo many doctors trying to figure out what was wrong. No one, could figure it out. They always were treating individual components of it. And from what I'm learning that's about all they can do. Because it's so complex and complicated, there is no one solution. Don't get discouraged!!!! At least, now you know what is wrong and you have a place to start. For me, knowledge has been such a relief, even though I'm no further along in my solution than I was when I found out what it was. I do find that compression garments, make a huge difference. Also, increasing salt and hydration is important. I find that Emergen C is beneficial. I just recently started using Licorice Root --instead of Florinef. Florinef gave me a headache and made my BP go too high. I've only been on it 3 days, but I'm finding that I'm not using the bathroom as often. So I am holding my fluids better. That's a good thiing. I always feel dehydrated, no matter how much I drink. Just remember, you too can do it. You've got a good support system here at this site. We all know what you're going through. I've learned allot since coming here and I know I still have allot to learn. It's a good place to get some really good information and tips from others who actually KNOW and have EMPATHY!!!! We're all in this boat together, we're not gonna let it sink! RIGHT PEOPLE?????????

What type of study did you do for your EDS? I was diagnosised with EDS, but I'm sure I have vasucular issues. I had leg vein surgery when I was only 26. Severe varicose veins. I have bad blood pooling in my legs and abdomen. What do you do for your EDS? I wear full body compression. I too am deconditioned and feel the EDS plays a big part in this. I'm totally exercise intolerant. I bruise very easily. I have allot of pain all over. I too have Chairi 0. What degree of drop do you have? Mine is 2-3mm. I don't know if this is playing a part too. But I have arthritis in all but one vertabrae in my whole neck and back. I too have osteopenia. It's so odd to be that this seems to be a pattern with so many of us. I don't think doctors will take the time for us, because we're so complex. Why should they learn about such issues when less than 1 percent of the population has POTS. They have too many other patients for one to take up so much of their time. I have yet, to find help. But, still HOPING.

What type of study did you do for your EDS? I was diagnosised with EDS, but I'm sure I have vasucular issues. I had leg vein surgery when I was only 26. Severe varicose veins. I have bad blood pooling in my legs and abdomen. What do you do for your EDS? I wear full body compression. I too am deconditioned and feel the EDS plays a big part in this. I'm totally exercise intolerant. I bruise very easily. I have allot of pain all over. I too have Chairi 0. What degree of drop do you have? Mine is 2-3mm. I don't know if this is playing a part too. But I have arthritis in all but one vertabrae in my whole neck and back. I too have osteopenia. It's so odd to be that this seems to be a pattern with so many of us. I don't think doctors will take the time for us, because we're so complex. Why should they learn about such issues when less than 1 percent of the population has POTS. They have too many other patients for one to take up so much of their time. I have yet, to find help. But, still HOPING.

My BP can change from moment to moment, as well as my HR. Your heart rate increased by more than 30 points. That's the tell, tale symptom. If you go up 30 or more points or over 120 HR, your considered to have POTS. Some people have their BP go up when they stand, others don't. Unlike orthosatic intolerance whose HR drops when they stand. My sister has this, on her TTT within 3 minutes, her Heart stopped. They were getting ready to give her the epi in the heart and it started back. I on the other hand have POTS. My HR increases always 40 or more points. It's the disfunction of the autonomic nerveous system, it's so unpredictable.

I do this too. A doctor at Mayo said that since I'm hyper sensitive, I also hyper ventilate. He recommended a CD by Andrew Weill called Breathing. It is supposed to help you learn how to breathe properly, especially when these hyper times occur. Haven't gotten it yet, but think it may be helpful. My breathing actually brought on a POTS attack when he checked me.

Hey potsgirl, Hoping everything goes well with you. I'm glad they caught it before it ruptured. Mine ruptured and because of not having insurance, I didn't get surgery for 2 years later. Lots of damage and nearly losing my life over that one. Good you won't be going through that. Here's hoping for a speedy recovery and less pain when you're recovered. You should feel allot better.

How do you use a chair in London? I went on tour of Ireland and England a few years ago. It is not set up for the disabled. The cobblestone walks are very uneven and narrow and the bathrooms are not set up for chairs either. Just curious. There are also allot of steps everywhere and up the hill and down the hill. The subway's don't really accomodate them either. That's one thing I really thought about when I was there because my ability to walk was getting worse then. I did love my visit and hope to go back some day.