Kellysavedbygrace

If your shortness of breath is caused by too much histamine in your digestive system Zantac might help. I take a double dose of Pepcid 2x a day which helps me but I take it due to the Mast Cell issue I have. Not sure if it would help you but you could try- probably wouldn't hurt.

By the way I have not heard of respiratory failure but there are lots and lots of posts about difficulties with breathing here.

Spanx.com - super duper strength. I like the one that goes up to the mid chest and covers the thighs. I live in mine. I agree w E above. I'm always finding myself agreeing w her.

This is fabulous! I'm thrilled to see this. If accepted well it could really help in assessing and diagnosing Dysautonomia in general practice. Thanks Rachel for sharing!

I don't know either. I haven't heard of that connection but I have a copy of the latest medical text, "Primer of the Autonomic Nervous System, 3rd Ed.". I searched "pulmonary embolism" and no search results were found. I would think if there were a connection that was well known among specialists in autonomic dysfunction there would have been something mentioned in that text. It was released last Nov so it is fairly up to date.

I am not sure about this. My Dr. Had wanted me to get up to 5-6x a week this past summer and I just couldn't. I've now settled into 3 really strenuous workouts 3x a week. My body seems to need at least one rest day in between. But- we all are different. I'd consult with whomever recommended the exercise for you. Or if you did it on your own your primary or autonomic specialist.

I've been to Cleveland Clinic as well. I'd agree with both above request a full autonomic workup with Dr. Jaeger and a Neuro consult w Sheilds. During their tilt table test they do not draw a serum Catecholemine unless it is requested and authorized. I'd suggest having that done because for me it helped me figure out what was underlying my POTS. Here are some of the tests they often do for an autonomic workup: TTT, QSART, Hemodynamic Lab, Heart Rate Variability, Valsalva, Cold Pressor and Thermoregulatory Sweat Test. It is a great place to go. If you can afford it, I'd recommend staying at the Intercontinental hotel which is attached to the main hospital. We went last Feb. It was so cold. Being able to get to all my appointments without going outside was nice. Also, if you are wanting to consider exercise, try and get a consult with their cardiac rehab team. They helped me create my own protocol that has helped me go from severe exertional intolerance to intense workouts 3x a wk for an hour. Feel free to PM me too.

Yes, I know this symptom well and wish neither of us had it. Actually lots here struggle with this. It is by far my most worrisome symptom and seems for me to be connected with overstimulation of my CNS. When it is bad, it instinctively makes me think about going to the ER- yet I know, since I've had this symptom w a pulse odometer on, the ER team would do nothing for me. Perhaps one day we'll figure out a way to measure oxygen in the brain. What I understand is happening is that I'm having a loss of cerebral blood flow that is not life threatening (it gets the blood it needs, not as much as it wants). This feeling puts me lying down flat in bed. Even though sometimes lying down feels harder. It does eventually help w the symptom because gravity is helping the blood flow. When bad, like your episode Sat, I notice my sympathetic nervous system seems so wound up it is hard to relax. A massage, warm compress around the neck or a good cry helps. Sometimes I can't do anything to control it- other times the relax techniques help some.

Jangle, when you say the IV can be dangerous, what do you mean? I'm aware of risks such as infection, venous insertion / maintenance issues and sodium balance concerns. Are there other risks you are referring to?

I also started on Fludrocortisone and was unable to tolerate it. IVs are great but only temporary- I get maybe 24 good hrs so I typically use this as a preventive measure (before flight, dental work or an important event) or a recovery measure when I'm in a bad flare and can't seem to get out of it on my own. Fluid intake is key for me. Gotta drink lots (2 ltr min- average of 3) of non-carbonated fluids. 1/2 is usually water but the other half is a mix of Gatorade, vitamin water, coconut water, coffee, almond milk, V8, green juice, other fruit juice etc. This has been important for me as drinking all water will dilute me and make me more symptomatic. I also still heavily salt my foods, go w a salted rim when possible, but I've cut back some on that since getting the MCAS Dx. Still doing it, but just not as much. I also wear an abdominal binder every where I go- never leave home without my SPANX. That helps.

House calls? That makes me want to move to the Netherlands! I used to struggle w the early morn appts too but now I tend to function better in the AM. And now prefer anything I do be first thing. Im still dealing with most/if not all of the same Dysautonomia symptoms but Before I was homebound w severe exertional intolerance. I started Mestinon and an intense exercise protocol (modeled after Dr. Levine's) last March- slowly but surely I've improved my functioning. It's been very much like one step forward and two steps back. Because workingout often wipes me out requiring hours of rest to recover. Although I still have plenty of days whereImin bed at home, most days I'm able to get out and run a few errands. I just have to be careful to not overdue like I did today- now in bed with the "been hit by a Mack truck" feeling.

I can't count the number of hours I've spent thinking about going to the ER this year but I've managed to avoid it except for one visit this year when both my autonomic doc and primary wanted me to go to rule out stroke. I knew it wasn't stroke but went at their insistence. This week I had a severe flushing episode that had me very short of breath and I was paying close attn to my throat. If I had any swelling (anaphylaxis) I would have gone but that did not happen. I had all sorts of other problems, erratic HR, BP, palpitations, parasthesias, fever, etc. I've kinda learned that when I feel like I'm dying, I'm not. I agree w E, if your HR is that high and doesn't come down, especially when supine, you should go to ER. And, like Leigh, I thinkits probably best to call your local doc who can help manage acute situations.

What encouraging news. Thank you for sharing.

I'm sorry to hear of your troubles. Have you been diagnosed as hyper pots? Have you had your Norepinepherine levels checked when upright? I have hyperadrenergic POTS with Mast Cell Activation Syndrome. I also have Neurally mediated Syncope and severe blood pooling. I'm still trying to find the best treatment protocol but for me Klonopin is really helpful- (especially w oscillations of the heart) a minimum dose in evening before bed. I did not tolerate BBlockers well, nor the SNRI - now I am on high dose Antihistamines (which have been great help) and a birth control pill to stop anemia. I also use Mestenon with good success.

Sorry to hear about your son. That must be so frustrating for you. I also get "seizure like" episodes- smell burning, out of body experience, pronounced , occasional tremors followed by crippling fatigue (most common) and although I have had an EEG suspicious for seizure, my local neurologist (who is a epilepsy specialist) and my hematologist, (Mast Cell Dr) individually think I'm not having real seizures. Although to prove it we would need to do an inpatient EEG which I'm not planning to do. Seizure type symptoms can be caused by mast cell activation- so that is what I suspect is happening to me.

I think this is a great question that we all wrestle with in different ways. I too am in my 40s. I have 4 kids and a wonderfully supportive husband also. At first I dealt w it as a battle. Any energy I had went to proving to the doctors that I had something wrong- that it really wasn't anxiety disorder. That lasted 6 weeks. And then, the new battle. The much bigger and not so easy battle of figuring out how to live. I used to focus on the days. I would have some good days, and some bad days. And although now I still have some days that are good and some days that are bad I no longer talk about or think about things in terms of the day. I try my best to live each moment as it comes and really focus on making the most of the moment. Every plan is subject to change (at the last moment) and every moment I feel good I try my best to enjoy it. I don't think about what might have been if only and I am not angry at God for where I'm at. And although I allow myself to cry sometimes (actually think it helps my parasympathetic system) and at times I do feel sorry for myself, I don't let that mentality stay around long. Now, the energy I have is spent in this priority: God first, family second, and any energy I have left is spent researching this condition (POTS, MCAS, NMS, etc) and better ways to treat it. In March I started exercising with cardiac rehab. It was pitiful- dark sunglasses, earplugs, could barely do 15 mins on recumbant bike. But, Yesterday I did an hour long circuit training workout w a trainer- almost all upright. So even though I've spent most of this day thinking about my severe flushing episode this morning where I had to sit on the floor and convince the clerks not to call 911, and even though I sat in the parking lot for 2 hours before my husband and his friend rescued me and brought me home, I still celebrate the accomplishment of getting out and trying, and having improvement in my exercise abilities, and I hope one day I will be on a treatment plan that helps me get back closer to my old normal. But until then, I am thankful that my real hope is not in medicine, and thankful that I have time to enjoy a slower way of life. I should also give credit to so many of the participants on this forum who inspire me to keep moving forward- including E and Katy above. . I notice you are newer to the forum. I want to encourage you to join our discussions as much as you can. There are so many really neat people on here. I'm sure you'll be inspired too.

Just pulled up this post after a very severe flushing episode this morn. I'm still fairly woozy like you said. Mine don't seem to be precipitated by food or stress, rather upright posture. This morn I was feeling really good and decided to go shopping. I realized I wasn't feeling well and went to checkout. By the time I was w the cashier I had to sit on floor to keep from fainting and reassure her that I was not having a life threatening attack. I've had pots for a yr and a half, recently diagnosed w MCAS but just recently started w flushing. (last few weeks have had occasional flushing episodes). I wonder if it isnt fairly common to have this symptom come on 1-2 yrs into it. I have not been hypertensive at all but today noticed an elevated Systolic BP w it. (30 Pt jumps- erratic). No wonder I feel so good. For anyone out there w this experience- are there life threatening warning signs associated w flushing?

I have this problem just as you have described- lower legs, feels like I could scratch my skin off, most frequently in the evening when I'm reclining or in bed. No rash but almost feels like little bumps on the inside of my skin. I'm quite sure this is mast cell related for me.

Yes. Yes! Yes!! I began cardiac rehab last March following a visit to Cleveland Clinic where they strongly recommended it. My local cardiologist here in Clearwater, FL had to write a script for it. At that time I had tried some yoga and exercise bike (but both made me dizzy and I had heart palpitations all over the place.). On my first day of cardiac rehab I could only handle about 5 mins- wore my sunglasses and earplugs but was glad to have the nurses watching for signs of abnormal heart activity. I worked w them for about 6 weeks 3x a week. On good days I would be able to take off my sun glasses and get going pretty hard and strong on both the recumbent bike and rowing machine. On good days the nurses would often tell me to slow down so my HR wouldn't go too high. On bad days I could barely look up and it was downright pitiful. I had pretty bad exercise intolerance and would almost always crash afterward. but starting w cardiac rehab gave me the security I needed to know I wasn't going to die- because on bad days that is what it felt like. (actually, my bad moments still feel that way). Exercise has been critical for me moving from being bedridden to halfway functional. My muscles are strong and my balance is better directly bc of the exercise. Since discharge from cardiac rehab I have worked w an exercise therapist. I now only see her once a wk and it is out of pocket- but worth every penny. Today for instance, I did circuit training for nearly an hour. Almost all my exercise w her now is upright. I still do mostly recumbent work without her on the other days of the week. (3-4x a wk). I do have to be careful. I easily grey out, feel dizzy and tach. I have learned techniques like "sit/stands" (squats fast on a chair) that help me restore blood flow to the brain when I'm greying out or dizzy. I monitor my HR like crazy and make sure it comes down to below 120 between each circuit - this is a bit laborious but essential bc my HR will go from 70- 170 in less than a min. And it is important that I don't start my more strenuous exercises when my HR is already high. I often lay down during a sessions and go home and lay in bed to recover after my workouts. All that said, I am confident to do these more attempts routines which help to manually pump blood bc I know I'm not going to have a life threatening episode. Exercise has not improved my POTS (I still tach pretty high, pool blood pretty drastically, still have all the symptoms that go along w it) but it has strengthened me to begin living life again outside the confines of my bed/ house.

My first feeling is a faintness (sometimes like a huge wave coming over my face, head, neck, etc.), then (when upright) aching pain in my whole body but mostly legs and chest, then I grey out or red out, then I black out, then I faint. The only recovery is lying down or manually pumping the blood (like through "sit stands" - like squats on a chair- that my exercise therapist suggested- these immediately restore my blood flow). I often grey out when exercising and often red out when taking off my abdominal binder. I have never drop fainted and almost always get some or all of these warning symptoms. I have laid down in stores, restaurants and almost always at church. Sometimes when driving I have to pull over to lie down. I recline and put my feet up on the dashboard w quiet and my mind on a book or video game. In about 5-7 mins this will usually help me prevent the faint.

Getting to the root cause of your Dysautonomia is critical for identifying treatments that are helpful. Simply bc you have EDS makes me suspect Mast Cell Involvement but I'd ask your doc. Although it is a more rare presentation there are several participants active on this forum that have the triad: Dysautonomia, EDS and Mast Cell Activation Syndrome. I also agree w E that ruling out autoimmune Dysautonomia is important. I was Dx w POTS and NCS last year w no cause and spent mostof that time at home or in bed. Recently I was Dx w MCAS and now on high dose antihistamines which have really helped. I'm able to be upright more but very tachy still w many symptoms. Also I have the hyperadrenergic type (w mostly low BPS) and salt is helpful for me daily but especcially when I'm symptomatic.

I have had a prob with stockings but not the same symptoms- I get severe parathesias in my legs if I have them on for any length of time. I have had success with the abdominal binder and basically don't leave my house without it on. I use the super duper strength spanx: shaping mid thigh body suit. Without it I get symptomatic when upright.

I was at the Cleveland Clinic in Feb and worked with both docs in the syncope lab and two in neurology. I did not hear about him but he could have been there at a different time.

Interesting question. During the 6mos before having a severe onset I had 3 pretty bad colds that kept me from work for at least a week each. Since onset, I have only had one little cold w a slight sore throat and runny nose. Yet, I often get that scratch in my throat feeling like I used to get before a cold. Funny thing is, almost every day now I feel like I have the achiness, fatigue and brain fog of the flu without the traditional sinus problems.

Here is a link to the paper Dr. Afrin recently published that is a guide for diagnostic workup. It includes a list of common symptoms, diagnosis criteria, and suggested initial treatments. The main point of the article is that anyone who has multiple symptoms in man or all organ systems should be worked up for MCAS. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/ What this article does not include are notes about proper handling of specimens which is often a problematic in gathering laboratory evidence of mast cell activation. For instance, of the 28 vials of blood drawn, all but a few had to be pre chilled vials and kept on ice until testing. The metabolites being measured are extremely heat liable and even a few moments at room temp can drop levels. Most of these tests should be performed immediately but unfortunately most of them must be sent out. Dr. Afrin's lab at MUSC is well trained on these protocols which for me made the difference in making the long journey. If you want a copy of his primer for physicians which details this just PM me and I will forward. Rama, I value your input and PM'd you about this. Bren, thanks for your insights and I am glad to not be alone on this journey. FutureH, You have been a huge blessing to me with your wisdom. Sorry if I was unclear on antihistamines. I started with 10mg Claritin (Loratadine) 2x day and 20mg of Pepcid (Famotidine) 2x a day. Dr. Afrin wanted me to get up to 40 mg of Famotidine 2x a day. I am now titrated up to that level, have shifted to the generic versions from the pharmacy (to save money) and doing well when I'm not crashing. When I crash I add a dye free benedryl. Probably need to add more H1 and H2 as well but haven't figured that out yet. As a side note- Monday I started on the aspirin therapy protocol. 1 baby aspirin put me in bed crashing for the last 2 days. As you probably know aspirin can trigger Mast Cell degranulation but aspirin also blocks prostaglandins, so for me, I plan on trying aspirin again at a lower dose in a few weeks with the aim of cautiously and gradually building up resistance to the degranulation. This approach has been helpful for some. Will keep you posted but would love any insight you have to using aspirin. Naomi. Thanks for your kind words. It is the Loratidine and Famotidine that have specifically improved my brain fog and fatigue, but again, only when I'm not crashing- which unfortunately is still a common occurrence. Stv- the article mentioned above has most of the first line lab tests included and might be helpful to take to your doc since it is a published work. He also did some second line testing for additional mast cell mediators that are less specific (meaning they can be elevated by mast cell degranulation or other conditions). Some he did on me were the Fractioned Catecholamines, Tumor Necosis Factor alpha, Neuron Specific Enolase. Doozy, Thanks for all you have shared with me. I didn't realize Afrin was on the national board. Cool. Kitt, I'm so glad you posted that Grubb video. Thx. I wish I had a written list of the other items. I'm not sure it was exactly 40 but it was somewhere in that neighborhood. A good starting point would be the list of common symptoms from the article above. From his progress notes I'm going to list the ones he noted in response to his list questions. If I recall he would ask something like, "Do you have any issues with your skin?". And then I would tell him about my severe itching and rash on my left hand. Here's the list of his notes. ----- chills, cold extremities, soaking sweats, headaches, migratory pruritus, chronic fatigue, migratory body aches, irritation of eyes, difficulty focusing vision, severe bilateral tinnitus, ear drum spasms/ pain, easy bruising, lip sores, ache/tingling/ numbness at the old root canal site, dyspnea, proximal dysphagia, GERD, nausea, diarrhea alternating w constipation, periodic inability to hold urine, left hand rash, dependent edema in legs, lymph node tenderness and soreness, scattered subcutaneous modularity throughout extremities, sleeping difficulties, sleep apnea, episodic cognitive dysfunction, frequent pre syncope, rare syncope, alopecia, multiple dental issues, fluctuating appetite and weight.----- OK that's probably more than you wanted to know.