babettess

Rene, I don't have any experience with Clonidine, but I do know how frightening it is to start new medicine. Hang in there and make sure someone is with you when you take the first dose. For me, a little comfort and reassurance can help calm those nasty, scary feelings when starting a new medicine. I also take metoprolol 12.5 mg 3 times a day and it does help my tachycardia. Did you wean off of it slowly? If you go off of it too quickly even when on a very small dose, sometimes you can have an exacerbation of symptoms. Just wanted to pass that on, too. Sorry I con't help you more but know you will be in my thoughts and prayers tonight. Babette

Suzy, I am so sorry you are going through such a rough time. The unpredictability of this illness is just "too much" sometimes. Please come here and vent whenever and as often as you need. We do understand. I know how scary it is to feel like you are sliding into a major flare or POTShole as I like to call them. Keep hope and remember to do all the things that have helped in the past. For me, this is very difficult to do as I tend to "forget" what helps when I start into that downward spiral. If that is the case for you too, maybe ask someone close to you if you are remembering to do everything that helps or maybe just read on here to remind yourself. Don't beat yourself up too badly. You have a lot going on in your life right now and maybe when things calm down a little, you will feel better. You will be in my thoughts and prayers. Babette

Welcome Shoe, Sounds like you have been through the medical run-around. I hope you get some good answers soon to your interesting symptoms. You're posts are very enjoyable to read. You have quite a wonderful way with words. Sorry you're here, but glad you found us! Babette

Well my darling husband asked me the other day, "Do you think Daughter #1 ( severely mentally retarded, Cerebral Palsy, seizures,Etc. Etc. Etc.) could have POTS?" All of a sudden it hit me that she could!! The whole time we have been focused on my youngest daughter (Daughter#3, just graduated, dx with POTS in March 09) and my own POTS when daughter #1 could have had it the whole time and we didn't pick up on it because of her other disabilities. I am not sure how to proceed with having her tested or whether I should just try some extra salt, water and compression (which she has already has been prescribed) and see what happens. Some how I can't see her getting through an actual TTT. Well, actually I can see her doing a TTT as she would think it was a carnival in the beginning. I just don't know if she could physically keep her balance and handle being restrained. I'm going to do a "poor man's tilt table" myself and see what happens. If her heart rate increases like mine and daughter #3's does I think I we will have a good idea that she has it too. Life just gets funner and funner!! The good news is I still have one daughter(Daughter #2, College cheerleader) unaffected at this point. Just wondering if anyone knows someone with significant disabilities and POTS and if the doctors were able to diagnose/treat them without much input from them?? Thank, Babette

Yep, I feel like my neck is a toothpick trying to hold up a cantaloupe. Babette

I can't get the link to open. I went to the NYTimes website and can't find the article there either. Any ideas?? Also, is Dr. Rowe a masto specialist at John Hopkins???? As you know, I might be needing one. Thanks, Babette

Hi Suzy, I understand where you are coming from. I feel one of the worst things about having a chronic illness is the unpredictability. I never know when I'm going to have a good day or when I'm going to have a bad day. Yesterday was a bad day and today is a good day (so far). Hang in there. We all have to go thru a little rain to get to the sunshine. For me I had worse symptoms when I was 25 and was down for 3 months in bed and then I was good for 20 years. Now I'm about where I was back when I was 25 again. I'm out of bed but still not good. So for me, my good and bad times come and go and at one point were actually pretty much gone for about 20 years. We are all so different. I'm sending thoughts and prayers that you will get "good" again and real soon. Babette

Hi Mack's Mom, I am beginning to wonder if I should even have the labs drawn at my local hospital. They actually ran a "TYPSIN" instead of tryptase test. So that's why the reference range was so different. I am awaiting a call now from the lab to see if they still have enough blood to do the correct test or if I have to go back in and have more blood drawn. I am having the tech who is helping me also make sure that the lab they use can run a Urine "Methylhistamine" test instead of the "histamine" that was done the first time. I am preparing to do my second 24 hour urine methylhistamine tomorrow so I am trying not to eat anything today and tomorrow that might mess up the test. Last time I did the 24 hour catch, I didn't know that I couldn't eat certain foods and ate whatever I wanted. Hopefully this time they can run the correct test we will be a little closer to some answers. Thanks for noticing the problem with the reference ranges. I would have thought the test was normal if you had not alerted me to that. I will definately be following up on it. Some days I'm soooo tired of having to be my own advocate. Thanks again for all of your input. I really appreciate all your help. I am going to look for a allergist to see as my current ENT "does not treat high histamine" so obviously he doesn't treat masto or MCAD. I live in such a small rural area that I have to travel to see any specialists. I was evaluated at CC and the dr. there knew my histamine level was high and yet when I got his letter of recommendations (8 weeks later) all he said was that I should see an allergist about my high histamine levels. I would have thought he would have referred me to someone, but he didn't. Oh well, I will try to find someone in the Baltimore area that maybe knows about masto/MCAD. Baltimore is a little closer than Cleveland. MEDICAL POINTER (# 4786869 or whatever)- Always double check with the lab after they get your test results to make sure they ran the correct test. Thanks so much, Babette

Ramakentesh, You are such a wealth of information. Thanks for all of the research you share with us. Babette

Hi All, I just got my tryptase level back and it was 38.5. The normal range at this lab is 10 - 57. So hopefully that means no mastocystosis!! Now I just have to get the 24 hour urine methyhistamine done and see if it's still high. Thanks for all your help with this. Babette

Mack's Mom and LindaJoy, Thanks so much for your responses!! I haven't had the 2 hour urine histamine test yet as our local hospital only does 24 hour urine. My order from the doctor is written as "methylhistamine level" but when the lab does it it comes back as histamine. Maybe I will specifically ask them to check and see if they can do the methylhistamine since it's better than just the histamine. How sensitive is the histamine test to foods? The first time I had the test I wasn't given any instructions on a special diet and now that I've checked into the proper diet, I probably had a lot of the foods that I wasn't supposed to eat. Do the foods that you aren't supposed to eat increase your histamine levels? Thanks, Babette

I wondered if a tanning bed would help increase my Vit D, but I don't think I could handle the heat. I do take 50,000 IU of prescription Vitamin D weekly and it has helped with my muscle pain greatly. I am very sensitive to medicine, but am able to take this supplement without any problems. Studies now show that low Vitamin D levels do cause physical symptoms. If your level is low, you might feel better after it goes up. So however you choose to raise yours, I hope you do notice a difference. Babette

Hi everyone and especially Mack's Mom , I have a few questions about MCAD and how it is diagnosed. I have checked the forum and found the answers to some of my questions, but not all of them. As I posted before, I have had some spells that some have indicated could possibly be MCAD. (These spells started within 36 hours of starting Metoprolol.) About 5 times a week I get these spells where I feel like I'm being choked. I can take deep breaths during this time and I don't wheeze. I do cough alot during these spells and feel like my throat is full of phlegm. Sometimes my face gets a little red. My heart rate and blood pressure don't really change during these times, although after coughing my BP goes up a little but is still not really high. Other than roseacea on my nose, I really don't have any other skin involvement. I have already had my urine histamine level checked and it was high at 141 ug. Normal levels at this lab are 13-62 . The lab report says the test is for Histamine Determination, Urine; and that results for this test are for investigational purposes only. It also says that total volume was not recorded and results were based on a 1000ml volume. I know my total volume was way less than that. So could this test have been inaccurate? I just had my tryptase blood level checked (still waiting on the results) and I am doing another 24 hour urine histamine level in the next few days. My Nurse Practitioner is so great at checking out anything I ask her to check. She wrote the order for a 2 hour urine histamine, but our local hospital doesn't do anything but 24 hour tests. (They are a small hospital and have to send alot of their tests away.) So I guess I will be doing the 24 hour one again. So my questions are: Does a high 24 hour urine histamine level mean anything by itself? Will the 24 hour urine show as much info as a 2 hour? Should the urine test be a 24 hour histamine or 24 hour methylhistamine or is there a difference? Will the test be accurate if you are taking antihistamines? If my tryptase level is high will that mean anything definative? What type of doctor diagnoses and treats MCAD? My ENT doesn't and my endo said that I didn't have mastocystosis because my HIAA-5 is normal and he left it at that. Should I have any other tests done? I'm trying to have my NP order as many tests as possible now so I can have the results when I go to see my POTS specialist the middle of June.(In case he's familiar with MCAD) What is the usual doseage of zyrtec and ranitidine and how often are they taken? I think I'm going to just try the meds and see if they help. Thanks for all of your help and I apologize if I have asked something that someone (or even myself) has already asked before. Sometimes my memory isn't what it should be. Babette

Congratulations!! I will keep you and your family in my thoughts and prayers!! Babette

Hey Babbette- Melissa may be on to something. Betablockers are contraindicated for those with allergies, asthma or MCAD. My throat tightness, particularly swallowing (and other symptoms!) were affected badly when I was on Atenolol. I was having such awful tachy, I wanted something to control it. Ironically, the atenolol made it all worse. My doc switched me to a calcium channel blocker, verapamil I think. That worked better with my MCAD. I also see that you already have a prescription for atarx. Take that as prescribed while you are having these awful feelings. It has something in it to help relax you, but it's also a powerful H-1: the equivalent of 2.5 10mg zyrtec. Hugs- Julie Thanks Melissa & Julie, I really think its quite possibe that the Metoprolol is contributing to this. The very first time it ever happened was only 36 hours after I started taking the metoprolol. I was on Atenolol for 17 years and LOVED it. My previous doctor took me off of it when I first started getting 'bad" and before I was diagnosed with POTS because he thought it was giving me inner ear problems that were causing the dizziness. I am hoping to change back to the Atenolol at my next dr. visit with my new doctor. I have tried both Verapamil and Diltiazem (which are both calcium channel blockers) and they made me feel horrible and I couldn't tolerate either of them. They also didn't calm down my heart rate at all. I will try my Atarax and see if it helps. I usually only take 6.25 mg which is a very small dose. I didn't realize it was so much stronger than zrytec. Thanks so much for your help. Babette

Hi Mae, Dr. Fouad oversaw and read a couple of the tests I had done at CC back in March. She was very knowledgeable and the sweetest person I met while I was there. I did not see her as her patient. I was feeling really bad after one of the tests and she checked on me and actually got a drink for me out of my bag. I felt very comfortable with her. CC was a bit overwhelming for a small town girl like me. The advice I can give you is to take plenty of snacks and drinks as you might have a long wait. I stayed at the CC Guesthouse which is right across the street from the entrance to the CC. The hotel was nice and the little restautant attached to it has great food. We stayed there so we didn't have to try to find parking. I think the price was about $120 a night. The higher price was worth it to me to be able to walk across the road and be at the CC entrance. I was actually able to walk the distance back and forth on the first day of my testing and to the CC on the second day of my testing, but not able to walk back over after my testing. My husband just walked over and got the car and came and got me. I had 5 tests done so I spread them out over two days. The first appt was just a consult and then they ordered the tests and I went back about 3 weeks later to have them. I will tell you that it took me 8 weeks to get the report from my doctor but that was a different doctor. If you have any other questions please let me know. I hope you feel better Babette

Hi Erika, Did you taper off the Prozac gradually over a period of time? Sometimes if you come off of a SSRI too quickly, you can feel pretty horrible. Sorry I don't have more to offer you than that, but hope you slow down and feel better soon. Babette

Hi Alicia, Thanks for your reply. Did the doctor's ever tell you that those times were directly related to your dysautonomia? Thanks, Babette

I get something similar if I smell some perfumes or hairspray. My throat feels like it instantaneously closes up and I won't be able to breathe. I believe I have overreactive airways (or something that sounds like that), because they mentioned that during a pulmonary function test. For me, I can quickly overcome the reaction by moving away from the provocation and breathing pollutant-free air. Also, sipping water stops the coughing. How long does a spell last for you? Have you since gotten off of the beta blocker that has started all this? I find it interesting that the benedryl helps you, but the tranquilizer doesn't. As for swallowing, and liquids in particular, I remember another poster on here years back who went to a very specialized doctor at NIH who deals with swallowing difficulties both diagnosing and helping. I also remember him saying that being on tranquilizers long-term affected his swallowing. In your case, I do not understand if your swallowing difficulty is only during a "spell" or any time? Have you found anything that can bring an attack to a halt? One more thing, have you had any back or neck injuries that may have affected the nerves in the area? I hope you get some answers. Thanks Futurehope, The swallowing problem is always there. It's just worse when I'm having a spell. During a spell it feels like I'm being strangled. My neck muscles are so tight even in the front of my neck. It's not really like I've choked on a piece of food or something. I'm still on the betabocker but am hoping that Dr. K will change it when I see him next month. The only thing that helps so far is Benadryl. I tried Xanax, but it didn't help and made me very anxious all the time. During a "spell" I usually feel this stranglulation feeling for an hour or so. After the main bad feeling of it goes away, my throat still feels tight for hours/days. I have had two car wrecks that have hurt my neck and I am going to PT to help with the residual pain/problems caused by them. My PT is great and has actually treated other people with POTS. He thinks these spells could be caused by the neck tightness, but of course can't do any formal diagnosing. This choking/strangulation feeling has just really been bothering me lately and I'm a little impatient and am having a hard time waiting to see Dr.K next month. I was hoping someone on here could help a little bit or steer me in the right direction. I got the feeling that Dr. K has an idea of what this is because he said we would talk about it at my next appt. My first appt all we did was go over my history and he didn't have any time to answer questions or make recommendations. The next appt will be for all of those. Thanks for your reply! It's just so nice to have people on here to talk to. Have a good day. Babette

Dear Friends, Thank you so much for this forum where I can come and ask the questions that no one else will understand. I so appreciate all the replies and the kind words. I know when I'm baffled I can come here and the participants will know almost as much or possibly more than most doctors. Well I've been to multiple doctors over the course of the last year for multiple reasons. One reason being these weird spells. None of them seem to know why I have these spells where I feel like I'm being choked and can't breathe. They also don't seem too concerned about this although it is the symptom I would most like to get rid of right now. This comes on suddenly and I haven't been able to find a trigger. These spells are really bothering me lately and they have me a little concerned. Other background info-DX with POTS-, possible EDS, possible small fiber neuropathy although QSART normal. I will be seeing a great POTS doc again in June for his recommendations and he said we will talk about this, but I need some guidance now. When this happens I feel like: My throat right below my Thyroid is being squeezed and that I am not going to be able to breathe. Feels kind of like something is pressing in on each side of my trachea. I can take a deep breath without any trouble but still feel like I'm not going to be able to take one. I cough repeated when I'm going through this. Throat gets sore from all the coughing. I feel like something is in my throat. Swallowing difficulty is worse during this time. Even on a good day,I have trouble swallowing or making a swallow start. Much worse with liquids and foods that aren't real solid like mashed potatoe. I feel like I'm going to choke if I don't have the liquid positioned just right when the swallowing action first starts. (I do choke very easlily.) Seems to involve my tongue and the muscles under it. I've seen ENT, neurology for this and they can't seem to figure out why I have this trouble. I get hoarse after a spell I have to burp alot during a spell What I've noticed during these spells: HR is usually normal or a little high when this is going on Multiple muscles in my neck(front and back) and throat and under chin are very tight. I can touch several very sore spots. BP normal 110/70 First spell happened within 36 hours of first dose of Metoprolol Benadryl helps. Xanax didn't. ( ER doc tried me on this and it didn't help.) Doesn't feel like a panic attack although it sounds like one Tests/Observations: My O2 sats are normal. Chest Xray, CT scan of chest, Ultrasound of carotid arteries, are all normal. My CO2 runs a little low which would coincide with Hyperventilation Syndrome. (Google is a wonderful tool.) C1, C2, C3 are all out of whack; C4-C5 have spurs. My PT says my neck is a mess. Possible EDS, but I don't see genetics til June. Also I have Fibromyalgia. What I'm wondering: Does this sound like hyperadneragenic POTS? I haven't been told what kind of POTS I have but the report from CC mentions beta-adneragenic something or other. Could this be Hyperventilation Syndrome? Could I have reflux? Does anyone know what kind of a doctor I should see for this and what tests I should have done? For those with EDS, does this sound like an EDS problem since my neck/throat muscles are so involved? For those with MCAD, (especially Mack'sMom), could this be MCAD? Other info on this: 24 hour urine histamine level high-141; IgE normal(actually very low-but within normal limits) and doesn't show any allergies; Endo says no Mastocystosis because 5HIAA or something is normal; I don't really get flushed when this is happening. Benadryl helps but I don't know if this is because maybe it just calms down my system. Sorry this is so long but I wanted to put as much info on here for everyone to make it easier to answer my questions. Thanks so much for just being there. Although I haven't done much posting, I try to keep up with reading everyone's posts and have learned so much. Usually I don't have to ask my questions because someone else has already beat me to it. Hope all are having a great day! Babette

Call Dr. Jaeger's office DIRECTLY and ask what tests need to be ordered or you will be making more than one trip. I saw Dr. Jagear on March 2 and had to return to CC for my testing on Mar 26 & 27. He said I should have called his office directly to see about scheduling the tests. I still do not have the letter with my recommendations from CC yet. I have my test results but they con't mean much without the doctor's recommendations. PM me if you would like more info. Babette

I have taken Atarax for about 25 years for what I was told were panic attacks. Recently, I've been told these weren't panic attacks, but POTS attacks. It has greatly helped me when I am feeling my worst. I only take 1/4 of a 25 mg tablet when I feel like I need it. I don't have the drowsiness at this dose, but for some reason it generally just helps me feel better. It's not a magic pill, but I wouldn't want to be without it. I'm am very sensitive to medications but have not had any problems from the Atarax. My only advice is to start out at the smallest dose possible and work your way up to the larger dose if necessary. Of course your doctor's advice certainly outweighs mine. Babette

I would have voted but I hit "view poll" and then it wouldn't let me vote. I would have put "other" and put that the one symptom I would like to get rid of the most would be "the feeling that I'm moving when I'm not". This is the most limiting to me as it prevents me from functioning more than the others do. It's hard to drive, work or even sit when the world feels like it's moving. I can still function when my chests hurts, I'm tachy, or nauseated. I can't work through the wierd movement feeling. Great job on the poll! I'm anxious to see how everyone continues to vote. Babette

Well I would like to officially welcome you to the wonderful world of POTS. Wouldn't it be great if tilt tables were as fun as tilt-a-whirl rides? I'm glad you have a definative diagnosis, and hope you and your doctors will come up with a plan that works for you. Babette

I currently work part time (15 hours per week) from my home but am not sure how long I con continue. 80% of my work can be done at home between the phone and the internet. (I provide family support to families who have children, ages birth to 5, with special needs.) So mainly I'm on the phone with parents or researching something for them. I can do this laying down if needed and on my own time schedule which is great. The other 20% is providing trainings and workshops and attending meetings. This is where I get into trouble. I don't drive because of the dizziness and the off balance feelings I have so I have to arrange for transportation anytime I have to go somewhere. (Cabs/taxis/subways are not among the landscape in rural Maryland. ) I also do bookkeeping at home for a small business for about 4 hours per week. This is also at my own schedule. I am trying hard to keep working but often wonder if I would feel better if the stress of trying to keep up with my work was gone. I continue to think about applying for disability and know at some point it will probably become necessary. Hats off to those of you who are able to work fulltime! I can't imagine getting up 5 days a week and going off to an 8 hour job. Babette