LindaJoy

I developed severe allergies when I was first diagnosed. I've had some allergies my entire life. I was born with Mast Cell disease, so I'm used to reacting, but not like this. I finally lost all foods, and am losing all meds, too. I am hyper reactive to many things I never used to be. I don't think it's the mast cell disease, either. I think it's my ANS system on hyper drive. I'm sorry you're going through this, too. I, too, cannot take any pain meds. The scary one is that I cannot take any antibiotics, either.

I'm sitting here right now with a root canaled tooth that is waiting for a crown. I don't know that it has made me any worse with my POTS long term, but when I first had it done, I was very ill for weeks and weeks. I am not looking forward to finishing it, as I know I'm going to be triggered again. Take care, everyone.

Hi, everyone. I do this, as well. Yogini, you said you get this from rolling over in bed. I do, as well, and then I get all sorts of symptoms, namely a feeling of heat and sweating. Does anyone else sweat and get a feeling of heat just from rolling over, and possibly have all these other symptoms, too? Lindajoy

Honestly, Elena, Mast cell activation disorder / syndrome and mastocytosis are a lot alike. They have the same symptoms, same treatments (mostly) same triggers. There are some differences. Mastocystosis means you have too many mast cells. This can lead to a type of mast cell leukemia, but this is considered rare and is not considered to be a consideration in MCAD (for right now). With MCAD, you have normal mast cells numbers, but they are twitchy and dump a lot. It is said that with MCAD, you can be assured that, with proper treatment and avoidance of triggers, you can live a normal life-span, but, as with all things medical, they may find that to be different with further research, but so far so good. Hope this helps. Linda

I get this, and you all described it to a tee. My husband, who was just diagnosed with OH, does this, too. We both describe it as having to concentrate to breathe, to think about breathing deeply because it feels like we can't, and it feels like, if we don't think about it, we will just stop breathing all together. I hate it. It's scary. When I get too bad with this symptom, I get out my pulse ox and my peak flow meter (for asthma). If I look okay on both of those, I satisfy myself that I'm actually breathing okay, it's just a feeling that goes with POTS. Now, that doesn't mean that I am no longer anxious! I truly am not comfortable again until I am breathing normally and without having to think about it again. Take care.

I have had Mast Cell Activation Disorder my whole life, and I have never had one elevated tryptase. I know a lot of MCAD people who have never had an elevated tryptase. It is one of the worthy markers, but it is not the one deciding test. That's why there are so many other tests that can and should be done. I agree that Dr. Afrin is the one to see if you're going to see a mast cell expert. I've seen so many of them: Butterfield, Castells, Greenberger, Akin, worked with Weiler by phone, and talked with Dr. Afrin. To me, he's the one to see. Take care. Best wishes. Linda

I was on gastrocrom for six months, several years ago. I experienced no side effects with it, but it did nothing for me, either. I did show kidney failure on my blood tests while on it, but I honestly don't think it was true failure; I think the gastrocrom affected the results somehow. I wish your son the best on his illness and gastrocrom trial. Linda

I hear you, Lillybits. After my husband and I had been married around five months, his hip went out and I had to take care of him. About a year later, his back went out. Two years later, I was diagnosed with POTS. We've taken turns a bit, but he's never been long term ill, like now. I feel for you both. I'm so sorry for all you two are going through. Thank you, Claire. I had no idea what PN meant. Yes, we go back in October to have the tests--haemodynamic and the others--to try and find the cause of his OH. We're hanging in there. His mood is bouncing around like a ball, but that's understandable. Thank you for your kind words. He just keeps saying, "I can't believe this. It can't be this bad." I know how he feels, and I feel helpless. Yes, it is that bad, and it is real. But, he'll adjust; he'll have to. You take care, too. Thanks, everyone.

No problem, Claire. With my history of anaphylaxis (my throat has gone totally closed once, with nuts, and close to it many, many times), I worry when someone is put on a beta blocker with a mast cell history. Yes, I think it would be wise to check with your mast cell doctor. You take care. Good talking with you. Linda

Thank you, Dani, for explaining your eye condition. I've been having problems with my right eye, as I said, for a few years now, but it's getting worse. All the docs will tell me is they think it's part of migraine, but I have the eye problems all the time, without the migraine pain. You take care. I'm so sorry for the issues you are dealing with. Will look forward to hearing your future results and hearing how you're doing. Lindajoy

Hi, Claire, I was handed a script for propanolol after my tilt two weeks ago. I have been told, for over 15 years, by most docs I've seen, that since I go anaphylactic and have had to use epi, I cannot take a beta blocker. It would block the epi that would be used in attempting to save my life should I go anaphylactic while on it. I know you have mast cell issues. Are you ever in the position of needing epi? If so, I would really hesitate using the BB. I had an ER doctor tell me one time that he had a patient come in with either a nut or bee reaction, in anaphylaxis to the point his throat was shut (that's what I do), and they couldn't save him because his BB blocked their epi. I have always been treated with calcium channel blockers. My endo, a few days ago, with all I'm going through with my steroids and the clonidine patch, said the usual treatment for what I'm going through with my excited beta system is, of course, a beta blocker, but knew I have the anaphylaxis issue and couldn't go that route with me. I understand your concerns about trying new meds. I'm the Queen of New Med Fear. Just wanted to mention this little snag, to be sure you're aware and you don't have anaphylaxis issues that could conflict with the use of a beta blocker. Take care.

Hi, Kim, It's probably a bit different coming from me because I have POTS, Addison's, Mast Cell Disease, etc., so I've been sick for years, and to be with someone who is sick now, as well, is probably a different experience for me than for a healthy person whose spouse has become ill. But, I will say, when John first got sick and it was up to me to get him to his appointments at Cleveland Clinic (I hadn't driven in a very long time--it was hard), and to be the supportive one while he was in the hospital, arguing with doctors, etc., made me truly appreciate all he has gone through while I've been sick. It is very different going from being the sick / cared for one, to being the care provider. I worried about John's health because I felt responsible to get him the help he needed since he was down and in no position to do it for himself. He said he felt the same way with me all the time. I worried constantly, and prayed constantly, that I wouldn't get down because John needed me, so the stress was huge. Like I said above, I was responsible to drive him to his appointments, hours away, when I hadn't driven in a long time, so this was hard on me. And, I saw in him signs of Dysautonomia, so I had to convince doctors and get him the testing he needed. We fired his doctor, got him in with mine (who is absolutely awesome), and thankfully, she listened and saw that, yes, he acted like someone with autonomic dysfunction. I learned, first hand, the stress from responsibility and worry that was on him so much of the time. Right now, since he's gotten his diagnosis, it's been even harder, in a way, because he's very upset about it. One minute, he wants to learn about it, the next, he's snapping that he doesn't want it, doesn't want to deal with it, that he's fine, etc. It's like living with a yo-yo. I try to keep in mind what all he has had to listen to and go through with me, so I try to remain patient. I honestly don't know how to approach him right now. I'm the kind of person, you tell me I've got something, I'll research it and deal with it. Why? Because I have to. He's not there yet, and it's hard for me to know what to do for him. I'm used to everyone here on these groups doing the same as me--seeking information so we can all live the best way we can with what we've got. He's back and forth, and it makes it hard to know how to relate to him right now, but it's early. We'll see how it goes. Right now, I'm just following his lead. So, there is another thing that I'm dealing with that he has had to with me: How do you relate to the chronically ill person at times, when they are struggling so? It's another hard thing to do. All in all, you do the best you can, as long as you do it with sincerity, concern, patience and love. I'm sorry that you and your family have to deal with these issues, too, Kim. It's so hard. John and I, over the years, have been at each other's throats at times, then other times, have relied heavily on one another since no one else is around. Take care, Kim.

Hi, Claire!!! Good to see you. I don't know his numbers start to finish because we don't have a copy yet, but Dr. Fouad sat down with us and went over his bp numbers, with his systolic dropped by 23 pts. nearly right away. She said he tried to overcome it, but it would fall again. I'm sorry I don't have the exact numbers yet. She said she would be sending them to us. Cassandra has been great talking with John about it. She has OH. I didn't know that about POTS and OH. Thank you for explaining that. The doctor at Case wrote on my TTT that I have POTS, OH, SFN and PN (what is PN?). Take care. Hope you're feeling a lot better after your infusion. Again, so glad to see you here! Hugs to you, my friend.

Hi, Dani, Glad you got some answers thus far. Could I ask you what your symptoms are with optic neuritis? I have a problem with my right eye that no one can seem to find. Thanks. You take care.

I used to swing on swings until I was pregnant with my second child. After that, no more swings. I used to ride all kinds of rides, except the tea cups (uuggghhh), but over the years, I can't do any rides any more. I've always gotten car sick, especially on the school bus. Elevators even bother me now, so I pretty much stick to my feet being planted firmly on the solid, non-moving ground as much as I am able.

Hi, everyone. After waiting months for the testing, my husband had his tilt table test this past Tuesday at Cleveland Clinic. He was diagnosed as having OH. He lasted 34 minutes, with symptoms beginning at 30 degrees tilted (numbness in his hands). When raised to 70 degrees, the numbness worsened, then he got other symptoms that followed, like nausea; headache, with pain going into his jaw; calf, hip and lower back pain; sweating; shakiness; tingling; graying of vision; shortness of breath (severe); tinnitus (right as soon as he hit 70 degrees is started and got bad). His heart rate resting was 55 bpm. The highest it got was 103, but it didn't get that high until the last three minutes of the test, or so. His systolic went down almost right away, by 23 mmHg. His diastolic was fairly consistent. He felt horrible, and was shaking for hours afterwards. He is still recovering. He's scheduled for tests to find the cause of his OH in October--hemodynamic, stuff like that. I've read some posts here that talk about OH, and if it's POTS, or if POTS patients have OH, too, things like that (I have POTS), but my husband wants to know what someone with the diagnosis of OH feels like every day. Do OH people feel like POTS people do? Also, he has hemochromatosis, an iron-storing blood disorder, and wonders if anyone here with OH also has that, and if so, how do you deal with both with having to have phlebotomies? Thanks, everyone. I have had POTS for years, but I've never known there was a Systolic Orthostatic Hypotension, or even a Diastolic OH. Any information you can give would be very helpful. Thank you, everyone.

Lyn, that is so exciting. I would love to be able to see Dr. Afrin. He said that he would oversee my testing here in Ohio with my pcp, who said she would do it, as well, but I know it wouldn't be the same as seeing him. I'm so glad he found your problem and you are seeing improvement. So happy for you. You take care now and thank you so much for sharing. Linda

I was told by my ophthamalogist, that my floaters are caused by the mucousy material at the back of your eye coming loose and floating around in your eye. It usually is harmless. She said to keep from bending over at the waste, as that can make it worse. I noticed, that if I squatted instead of bending, it got better--apparently they do absorb over time. Linda

It's my understanding, Ramakentesh, that when mast cells release their contents during reactions, prostaglandin is one of those things released in abundance, along with histamine, leukotrienes, histamine, etc. I may be wrong, but that's been my understanding since I was diagnosed with a mast cell activation disorder and wondered why I needed to be on different medications at the same time, all addressing the various chemicals released by mast cells during a reaction. Most people think all we need blocked is histamine, but other chemicals that are released in abundance also cause symptoms, so they need to be blocked, as well. Linda

A book like this for $1,000?????? Wow. Must be the secret to life and the afterlife in that for that price! Lindajoy

Hi, Issie, I think adrenal exhaustion and Addison's, or adrenal failure, are not quite in the same ball park. Adrenal exhaustion can lead to adrenal disease, like Addison's or adrenal failure, but it doesn't have to. And, adrenal fatigue, or exhaustion, usually is not life-threatening like Addison's can be. It definitely is life altering, but not life threatening unless it leads to failure. Adrenal fatigue is just that: my adrenals are straining because they're overused, they're tired, they're just not acting up to par. Resting, taking supplements, adding salt to your diet to keep your bp up, etc., can all help ease, and even eliminate, exhaustion. With Addison's, there's a serious underlying cause for those adrenals to begin losing power: a problem with the adrenal glands themselves, a pituitary tumor, a physical problem with the lines that connect the pituitary gland and adrenals, etc. But, if you think your adrenals may be involved in your ill health, even if they find "just" fatigue, it should be treated and taken seriously, since your adrenal glands are your body's little energy providers, and without them, you cannot survive. Take care. Lindajoy

Hey, Hugues. Just want to address your question about how the ACTH stim test could show normal when your adrenals may not be. This is how it was explained to me since this was my case and I wondered the very same thing. According to my Addison's support group leader, who I trust with this stuff implicitly: Until your adrenals are at 90% gone, they still function to try to keep you going. How the ACTH stim test works is that ACTH is given--it's a hormone that is produced in the pituitary which functions to stimulate the adrenals. Thus, when it's given artificially, your adrenals are stimulated. Unless your adrenals are 90% gone, they will stimulate, and they can look normal because they are functioning. Now, just because they are functioning during this test does not mean they are going to work like normal during normal working hours. It's like that light bulb scenerio I gave you earlier. Light bulbs will burn very brightly right before they burn out. They are slowly losing juice, but you look at them, and you think, "Oh, they're fine, look how bright they are." But, they're really not. They're about to burn out. Same with adrenals. Until they are at 90% gone, they will still try to "burn bright," but they are actually burning out. Eventually, they may just do that. Does that make sense to you? I hope so. Also, about taking corticosteroids for the rest of your life. When someone takes them for replacement of adrenals that are failing to work, they usually don't have the terrible side effects as if you are taking them at exceedingly high levels for let's say lupus or arthritis. We're taking the dosage that our bodies would be putting out there naturally, so our side effects are usually minimal, esp. if you're taking HC, as it is the steroid that's closest to our own natural steroid, so our bodies do pretty well accepting it. Take care. Lindajoy Lindajoy

I think I know what you're talking about, and it's terrible. I feel like my nerves are all tingling all over. I feel very on edge, like the least little thing will make me jump. Yes, it's horrible. I find that mine acts up for a lot of different reasons, like today is the first day of my period being done, and I have this for some reason. Must be hormonal. I'm also reducing my clonidine, so that will cause this. When I have to adjust my hydrocortisone, I get this. Chemicals, hormones, I think, at least for me. I'm so sorry you have to experience this. Yes, it's horrible. I hate days like this. Nothing really helps me except to not do a lot of physical stuff, to try and rest and stay still as much as possible, like just watching tv, but nothing too action packed because I can't handle it. I'm sorry, Pam. I wish I could help more. Hang in there. Lindajoy

Here's my experience with POTS and Adrenal issues. When I first got sick in 2005, I was found to have severe POTS. On a tilt table at Cleveland Clinic, within seven minutes, my bp dropped to 26/14. Yeah, POTS. But, for years after, I was exhausted to the point of being in a wheelchair at times, and bedridden a lot of the time. I was given two ACTH stim tests during that time, both of which I passed GREATLY. By greatly, I mean, there is a normal range your cortisol is to reach after being given the ACTH. I exceeded those ranges by over 30 points each time. I was told this was great, that my adrenals were working exceptionally well. I continued to be terribly fatigued, with severe abdominal pain all the time, etc. After being treated for mast cell disease with some medication I can't remember now what it was called, I went into terrible reaction. I was hospitalized, no one knew what was going on. Finally, I nearly died on my bathroom floor one morning, and was ambulanced to my local ER. Long story short, I went into adrenal crisis, I nearly died, and I was diagnosed with Addison's. This, after two normal ACTH stim tests. I joined a support group out of the UK. I hate to say it, but the people in the UK know a heck of a lot more about Addison's and adrenal issues than US docs (in my opinion, what I've experienced personally). This group I belong to is great. I asked them about the passed stim tests, and the head of the group, a guy who is a doctor of biology and an Addisonian himself, replied: When given an ACTH stim test, the idea is to stimulate the adrenal glands. Yes, if there is some life left in your adrenals, they will be stimulated, but if they are slowly burning out, they will overshoot, hence the high cortisol markers. Just like a lightbulb or a water heater over lights or over heats before it burns out completely, that's what an exceptionally good ACTH stim test level is showing. Your adrenals are burning out. If your saliva tests are showing fatigued adrenals, you have an adrenal problem. Hydrocortisone is what I take three times daily. I started on prednisone, which did nothing but keep me alive. I felt awful on it. I couldn't tolerate Florineff either. I was switched over to Hydrocortisone, and it took two months for me to find that I actually felt better. I could get out of bed each day, clean house, go to the store, cook..... It was amazing. I was an active person again. Was I completely healthy? Heck, no. I have too many other health issues to think this was my miracle cure. But, I was better, so much better. Am I saying this is everyone's problem here and that hydrocortisone or some other adrenal treatment is the answer? No. I'm not that narrow minded. But, I do want to caution against taking test results at textbook value, against what you're experiencing. My group told me, "Be careful because doctors will tell you that now that you're being treated for your Addison's, you'll feel totally fine and be able to live a normal life. That simply isn't true. You will never feel healthy, you will always struggle, but now you have the medication to help you through all that and keep you going." That's the truth. Just because you don't feel totally healthy on steroids does not mean you don't have an adrenal issue. It means you have an adrenal issue, that's why you don't feel well and won't ever feel totally healthy, but the steroids are keeping you going. People don't show low levels on an ACTH stim test until your adrenals are 90 % gone. By that time, you're lying on your bathroom floor, in crisis, like me. If you are needing cortisol to make you feel better, you have an adrenal issue. If you need cortisol to get you through surgery, you have an adrenal issue. Oh, and there are two kinds of Addison's. Primary and Secondary. Primary is an issue with the adrenal glands themselves. This is a more rare form of Addison's. Secondary is a form of adrenal disease that is caused by something other than the adrenal glands themselves, such as chronic steroid use for asthma or lupus, a pituitary tumor, a problem with the connection between the pituitary and the adrenal glands, etc. I have secondary. Thus, my aldosterone level is fine. Those with Primary Addison's have low aldosterone levels. Those with Secondary have normal. Why? Because Primary affects the adrenal gland itself and lowers the aldosterone level. Secondary doesn't. Also, Primary Addisonians have the golden skin. This is due to ACTH. Their ACTH is actually high, causing them to go bronze. Secondary people have low ACTH, thus, their skin is a normal color. Truly, I think the saliva tests are more indicative of adrenal issues than our conventional testing, because they can pick up sliding adrenals whereas our stim test only shows, as I said, when the adrenals are gone 90%, and this is a dangerous place to be. I don't want to alarm anyone here. That is not my purpose. I just want everyone who has a concern or question about adrenal function to be careful, learn about adrenal disease so he or her can be as informed as possible, etc. Why am I so passionate about this? Let me tell you why. For years, I had docs telling me this wasn't adrenal, even though I showed low ACTH and low cortisol on blood tests, couldn't get out of bed, had severe abdominal pain constantly, etc. I would crash continuously after each surgery, I was a mess. The only reason I even knew about Addison's and its crisis symptoms was because another support group, one for mast cells, talked about crisis symptoms because many of those people are on steroids and are at risk of going into adrenal issues. I ran a copy of the symptoms of Addison's crisis one day, just in case, since I had so many of the symptoms, yet docs were saying no. Well, low and behold, one day, I go to the bathroom and nearly die from Adrenal crisis. If it hadn't been for that list of symptoms, I would have pooh poohed my symptoms off and told myself it was just POTS, or another anxiety attack. And, there I was, dying, and doing just that. My husband called a rescue squad after I had no blood pressure. I'm blessed to be here. Please, if you have any questions about all this, PM me. I would love to help someone who is truly having an adrenal issue get better and not have to go through the **** I did. I can also direct you to the Addison's group I belong to. They're a great bunch and very knowledgeable about this condition. Oh, and please don't think if you have adrenal issues you are going to go through crisis, like I did. Honestly, crisis is very rare. I've been in crisis, severe crisis, once. I've been in adrenal failure several times. There is a difference. In crisis, you are dying, in failure, you just feel like you are. Again, I don't want to scare anyone. I'm just telling you, true adrenal issues can be serious, and aside from that, getting that issue under control can make you feel better. Will you ever feel totally well? No. I'm sorry to say, but no. Oh, and many who have thyroid issues also need the adrenal glands treated, as those go hand in hand. Most docs won't look for this or treat it. That's why many people on thyroid meds, who actually do need them, don't get better. Because if they have an underlying adrenal issue, as well, that's not being treated, the medication for thyroid will actually make the adrenal problem worse, thus, they feel worse, not better. So, what does the doc do, instead of looking at the adrenals? He or she ups the thryoid medication, then scratches his or her head, wondering why the patient still feels lousy. Sorry to ramble. It's just that adrenal issues are so often ignored or misunderstood, leaving too many people to suffer and, as in my case, at risk for serious episodes. Again, anyone wishing more information, you can PM me if you want. I get really concerned when people think they may be having adrenal issues, or tests are showing they are, and they're not getting help. Lindajoy

Wow, great transcript. Thank you so much for posting it, Christy. I will be undergoing testing with Dr. Afrin soon, but in the meantime, this transcript gave me the idea to send my latest EGD / colonoscopy biopsies to Dr. Afrin for proper testing with the appropriate stains. I'm hoping they finally show what we've all suspected for years now, MCAD. This man is amazing. I love how he believes his patients, doesn't give up on them, etc. I really, really want to go see him. Thanks, again, Christy. Lindajoy