Maiysa

PS I forgot to mention I didn't do well on Clonidine. I developed a fever twice on it. So doc took me off. How is the botox working? I would love to have some right between my eyes. Sorry, it's not fun to laugh when you have a headache. I have headaches every day. And they are making me so frustrated and now the line in between my eyes is worse. Also, for several years I couldn't stand up for longer than a few minutes. Mine ended up being my thyroid as a big part of the problem. Have you had your TSH levels checked also? And sometimes it's just the POTS. So sorry for you. Hang in there. I also had to quit my job. But I'm still hopeful. It's been six years. But we can't give up hope.

HI Welcome to the site Diamondcut, Sorry to hear of all your issues. I used to have POTS, but now have autonomic neuropathy and orthostatic intolerance, hypermobility and now mast cell. It's interesting that you mention headaches. It has now taken over my life and is now my worst symptom along with my neck in constant pain. I just bought the Driscoll Theory book Part 2 last night. Not sure if you've heard of Dr. Driscoll. But she has all three diseases as well and is a pioneer in this triad of diseases. Anyhow, I couldn't put the book down last night because I was fascinated by her theories as to why this is happening. Neck pain and headaches are what the first few chapters are about. Maybe you could find some answers and help in that book. And of course there are some amazing experts on here that know waaaaaaaaaaay more than I do. IT's a really great group. Also, I read that you are itching. I do that too and it's terrible. But I just tested positive for mast cell disorder which a lot of the others on here also have. Have you had that test? Thankfully to the people on here recognized it in me and they prompted me to get tested and they were right. I'm forever grateful to them also. Okay, let me know if you have any questions. And welcome with a big hug. Wish we were meeting under different circumstances. Maiysa

Hi Cat Lady, They have probably changed the mast cell protocol for diagnosis if it's been a few years. Some people don't have elevated tryptase levels, but there are other ways to test for it. Hard thing is finding a doc to diagnose it. But from what I'm gathering is that so many people with dysautonomia have mast cell and EDS. I have found several blogs and even facebook groups of people who have all three diseases. I just posted some information about Dr. Driscolls book, the Driscoll Theory Part 2 and she is a wealth of information if you can get the book. I will let you know if I come across the IC issue. Thanks Lindajoy for that other information. I was not aware that it runs in those groups as well. I'm no help either. Maiysa

Dr. Driscoll for a limited time has her book on sale-The Driscoll Theory Part 2. It was only supposed to be on sale for a few weeks, so it's getting close to that mark. I bought it last night and couldn't put it down. Since she is also a patient and her kids are affected, she is very passionate about finding answers. I downloaded it to my kindle for 99cents. Not sure what the price is on a regular book at Amazon. But it's really been helpful and she has some interesting theories if anyone wants to check it out. Good health to all Maiysa

Hi Cat Lady, I don't know much about this, but wanted to say that i recognize it because I have been reading a bit about mast cell activation and mastocytosis. This interstitial cystitis is usually mentioned. Do you have MCAD? If you are not sure, you could get your tryptase levels checked. Issie is quite familiar with this as well. Hope you are feeling better, Maiysa

Bahaha. That made me laugh so hard. This seems to be a typical diagnosis. Really doctors????? I saw a cartoon and it was a very sick person and the doctor came back with some paper work and it read,..."Well all of your blood tests are normal, so you must be crazy." You know if something is not right, don't let him get you down!!!!! I'm so sorry you had to deal with that. I went to 17 doctors before I got diagnosed. But it's worth the drive to Dr. Goodman in AZ at Mayo Clinic. I had a terrible time driving and got sick the entire way there a few years ago. But it was worth it. And if not Mayo, I'm sure if you put where you are, someone can chime in with a better doctor than that. That's ridiculous. Hang in there. Maiysa

Thanks! What a great article. I'm going to post it on the other site too. Appreciate it. Maiysa

Lemons, Janie is the best!! Whenever she calls, she laughs and asks, what strange things are happening now? Also, if anyone has netflix, there is a video on there called Healing Yoga for Aches and Pain. It is soooooo helpful. It's all modified Yoga. But if I do too much of it in one day, I get a bit sore, but that's all new for me. My joints are a mess right now. But I swear by this DVD. And also just riding my stationary bike for a just a few minutes helps a lot. But I have yet to find an exercise for my arms, they are getting so flabby. I used to have nice muscles, now they have vanished into thin air. I even bought half pound weights and my neck swelled up. Ugh.... Any idea

So true Issie. Haha!

Issie, I had the same idea about meeting. Sorry I missed this first. Could have handled it here. That made me laugh about Dr. G. and ganging up on him. And Janie is the best. I think this is his third nurse named Jane or Janie. She is wondeful!! I liked the one from England too. She came to see me before my procedure there, and even though she was with a different doctor she wanted to come give me a hug. That's so rare. They are the best there. Which is the complete opposite with my offices here. Oh well. Yes, he always says, you're my difficult case which I'm sure since then, it's cases. Gosh, can you imagine all these people coming in with this mess. He must be scratching his head. Issie, you are so kind to meet people and help them!!! Yesterday after talking to DR. Driscoll I felt so much relief, although I feel terrible for everyone, I selfishly am happy to know I'm not the only one. I felt not so alone is exactly how to describe it. Maiysa Can't wait to meet you

Yes, Issie that would be great. And we can always give rides too. My husband is wonderful at helping. Yeah, 4 hours would tax his patience. I will tell him to go hit some golf balls or something.

Oh that is wonderful. Yes, Issie is amazing. She helped get me diagnosed with 2 diseases. I owe her a coffee!! I have been seeing Dr. Goodman for a few years. I was told when he was in Rochester that he was coming back to Mayo, I called for 6 months every week till he was on the books. I thought they were going to get a restraining order. haha. So I was there his first day. I teased him that I'm his stalker. I call him Dr. Goodlooking. I hope is not disrespectful. The nurses always laugh. My poor husband. I said, honey, guess who we get to see again.... He says, oh no, not Dr. Goodlooking.

If anyone wants to do a coffee meet-up while we are in AZ, I could schedule my appointment around which date would work for everyone. It would have to be a weekend or a Friday night or something since we will only be there a day or two. Just a thought. We could private message to work out the details. But any others that would like to do that let me know. Maiysa

Lemons I got the same advice. I called Dr. G after I tried the workouts that they sent me and I was in so much pain. I called them and they laughed because they asked how much I had done and I had done about 10 minutes of those and about 40 minutes of an exercise DVD that was really hard. I was in so much pain and it took about 3 weeks to come out of it. But they had a good laugh at that. I used to be very athletic up until just 6 years ago and at 42 could do a found off and and and back bend that I could walk out of backwards. Now, I can't hardly get off the couch somedays. But they said just a few minutes a day and they are so right. Hey, we should all meet up when I go down to Phoenix to see Dr. Goodman????? Maybe have a coffee if anyone is up to it. Let me know. I'm easy breezy.

Yes, that's my guy. Oh I didn't realize you see him too. Now he said he had, I thought Janey said several, maybe there's more. I'm calling it stuck in the Bermuda triangle since there are three sides to this hot mess of a disorder. Issie we are stuck in the Bermuda Triange!!!!! I don't have POTS though. I used to have a terrible case of it, but since we cleared up the valley fever I only have OI and autonomic neuropathy. I had POTS for about 3 or 4 years and I could not stand up or sit long enough to eat a meal. It was terrible. But if I get out of homeostasis it can come back but more of a hyper POTS. And of course I have the strange fainting where my blood pressure drops so low I turn blue. I guess I'm losing oxygen but that's only on really bad days with meds or a bug. Anyhow, I will be seeing Dr. G in August or July.

Thanks Alex!

Issie, unfortunately, Dr. Driscoll also says she is having trouble finding doctors to treat EDS. Now if that's happening to a doctor imagine how hard it will be for the rest of us. I have called 27 doctors and not one will even look at me!! So I called the Mayo clinic. Hypermobile is basically the same as you said, as EDS 3, but they told me getting a diagnosis whether hypermobile or not will not change treatment. So that was helpful for me to know as I'm trying to chase a diagnosis. My doctor at Mayo said I could just come in and he will see me for this as well. He said he is seeing a few patients come in with the same three diseases of mast cell, dysatuonomia and EDS 3. He said he is noticing that these three combinations make dysautonomia worse. But that's all they have now. Dr. Driscoll was very encouraging and said help is on the way. They are really very passionate about finding what is going on. It gave me some hope Issie. Thanks for the information on the link. Will check that out. PM me if you want. I understand getting down in the dumps about this stuff. I have been for a while now. So not like me. But pain can also make things worse and this is all quite difficult for anyone to deal with. Hang in there.

Thank you Katybug!!!!! I can't find anything about it either. Doc said it just means my body is inflamed. Which I was glad for, because otherwise it can mean some very nasty stuff. So I will take inflammation over the others. But I don't like it.

What a coincidence. I just talked to her today on the phone. She is truly passionate about finding some help with these issues. She has a site called prettyill.com that you can also sign up to follow to get her new information as it comes in. She vlogs quite often. And what a sweet and caring person. So nice to have a doctor truly on our side. Maiysa

HI All. I found this interesting. I have an elevated CH50 and all the doctor said was, you have a lot of inflammation. Also, my IgE??? I can't remember....ugh..my brain. Anyhow that was low meaning I was susceptible to infections which I usually don't get. Knock on wood!! I tried to find in this test what CH50 means, but I couldn't find it. Doctor told me it was a compliment test but it didn't say anything nice about me.

I'm with you Issie. I would rather feel like I feel without the H2, than how I felt last night. That was much worse. I didn't know that some just take the claritin. That is great to know. Thanks for the information. I also tried Vitamin C and I'm a bit vulnerable to the acid reaction it can have. But I think that might be because I take the chewable...maybe pill form would be better for me?? Also I have been reading about quercetin. Do you have reactions to this supplement? Maiysa

Issie!!! I just read your post and it made me chuckle at myself, not because you had an awful experience but because it was extremely ironic that I had the same thing happen last night. Of course I'm better today to be able to laugh about this, although I do feel as if I was used a punching bag, but I lived. I was in pain last night and thought that maybe I wasn't taking enough of the H1 and H2. For me the Claritin works to keep the flushing down, but I have not been doing very good with the zantac. IT makes me feel a bit strange so I quit taking it. So last night I thought it might just be a coincidence with the zantac since it's working for everyone else. So I had a bright idea to not only try it, but take a slightly bigger dose. Well, within a few minutes I was laying in the bed with cramps, cramps I've never felt before, nausea and terrible acid reflux. Anyhow, I was up till 3 am moaning in pain. I'm also thinking it stopped my food from digesting and it was just stuck there. It was TERRIBLE. It felt like a rock was stuck in my intestines. So, yes, I will not be adding the zantac. My stomach feels so much better if I keep up with the juicing and putting a little bit of papaya and papaya seeds which are high in enzymes. I find this helps the gastric paresis. For me I sometimes have too much acid and sometimes not enough. I think it's about finding that balance. And I do just fine with the Claritin. I am not understanding why. Before I got sick, I used to take Zantac just fine. Will have to ask the doctor about it when I go in May for mast cell. But am going to start the antihistamine diet on Monday. I'm already pretty much gluten free so there will just be some slight adjustments. But I think you are on to something, I think taking too much zantac or pepcid can hurt your stomach enzymes. I also read an Italian study a few years back that said people who are on these ant acids like pepcid and prevacid and zantac actually are more susceptible to virus's, cold's and to gut bacteria's because they are actually killing important enzymes and acids that protect them from all the above as well as important enzymes to help break food down. IT's always something to think about. Have a good healthy day.

Jen, I'm really sorry to hear your story. I feel awful for you as this is a terrible chain of events. One thing that helped me with my son's medication that was costing $2,300 a month and the insurance company only paid half. Yikes. So I called the makers of the drug and they were wonderful about helping us lowering the cost. He is in college so was eligible for some assistance with paying his deductible. Maybe that would be worth a try. I wish I could help you with your employer, but I wonder if you can call the unemployment office to get some help and see what they can do. I'm not sure how the legality works with firing people who are ill. It's really unbelievable and terrible timing. I hope you can file for disability right away. If there is a financial hardship they can help you more quickly. I have been doing the regular filing since 2008 and still nothing. But everyone's state is different and so are our situations. My doctor was going to put me on steroids just to get the inflammation down, but due to fungal lung infection I can never take steroids. Also about the suit, I think there is a woman who has a facebook page and is listed under "God Still Needs Me" Living with Dysatuonomia. Anyhow, I think she also used this suit. I thought there was something in the book about it. I also know she was using something with ice packs in it too, to keep the blood vessels constricted to keep her blood pressure up. I'm probably no help. I wish I could fix all of this for you. Ugh.. But am sending you good prayers and health!! Maiysa

Thank you Alex, I got a chewable Vitamin D and am working my way up to a larger dose but am moving very slowly up to just 1000 IU. You are so right as I have heard it does help muscles. Thanks for your reply.

So sorry Alex that you have pain. Pain in the chest can be very scary. That is interesting about the vitamin D levels. I think mine was also at 20, but doc said it was only slightly low. But am not sure what reference range he was using. I tried to take the vitamin D but it made me feel strange, so will slowly work into it. Are you able to take the vitamin D? Thanks for the support. And hugs to you too Maiysa