iheartcats

I also haven't had any real issues with the normal flu shot - some years it doesn't work unfortunately! But I think I'll continue with that (and was advised on getting it by my EP before I moved when they are ready). I am very hesitant getting the swine flu shot. I hope I can get in to talk to a Rheumotologist about symptoms, etc. and just see what they have to say. I don't think I'll get the swine flu shot, though. I am concerned about crowds. I'm looking for work and that means mass transit + office. How much do surgical masks protect you? Are they worth it in the mass transit situation? I'd rather be safe than sorry. But in this job market it might be months before I find something anyway... :/ Not sure when the Swine Flu is supposed to take hold.

I am going to bring up the test this week and see what the PCP says. I'd like it to rule out things, anyway, as I don't want to go through more unnecessary allergy testing.

Jan -- I had no idea about the 1970s Swine Flu shot! What year(s) was it given out in? Now I'm very leary of getting it - I'm already showing signs of some autoimmune issues and really don't want to add to that. The regular flu shot I handle...but what is the different with the Swine Flu? I'd really like to know what makes it so dangerous, it has to be something! And mercury, no. If you break a CFL bulb now you have to very carefully clean it up and that's a minute amount of mercury. So why still in the flu shot? Didn't they learn the bad effects of Mercury enough in the 17th and 18th century?

I usually get the standard flu shot, because having the flu with POTS is miserable. Now the news outlets are saying a good half of the USA population could catch H1N1, which is supposed to be harsh this fall/winter season (higher temps, more complications, etc). I'm going to see my new PCP about the standard flu shot this week (I have a letter from my former EP saying I need this, am high risk) and I'm usually comfortable getting the standard shot. I don't know about the upcoming H1N1 shot they are discussing. What has anyone heard of it? How do you think Dysautonomia/POTS will handle two shots (obviously they'd be spaced out at least by a month). This is one flu I am personally worried about...usually I just deal with getting ill but this year I'm in a new area and away from my formers doctors who understood the seriousness of my illness. I am concerned if I do catch it and it gets bad, I won't be able to get the assistance/hospitalization I need. And I avoid going to the ER because they just don't get the POTS/Dysautonomia. Many can attest to how THAT often goes. Are you guys aiming for both shots this year? How worried are you about the H1N1 flu? What can we do to get the care we need if things do go badly for us during a flu outbreak?

I've been dealing with random hives for a couple of long years. I worry about these more than I should, rationally, but since I had them from Cashews once I still avoid eating nuts, just in case! I've been trying to pay attention and while I get them eating sometimes, I also get them from heat, stress, etc. (Does anyone else here get hives from having a good cry? I find this odd, but noticed mine were much worse after a bad day/cry.) I found this article online, and really want to have this test, especially since my last allergist visit ended with him assuming they were an autoimmune response. Has anyone had this test? http://www.alamoasthma.com/autoimmuneurticaria.shtml In persons with autoimmune hives, the IgG autoantibody that binds to the Fc-receptor tricks the mast cell into believing that the IgE on its surface has encountered an allergen. When this happens, hives or tissue swelling can result. (The diagram above shows a Mast cell with purple histamine granules. The "patient IgG" is the autoantibody that binds to the Fc-receptor.) Once it has been discovered that the anti-IgE Fc-receptor antibody is present in a patient?s blood, it is no longer necessary to look for any other cause for hives. Why this autoantibody triggers hives only intermittently is unknown.

Was the Metro one an XL (all day) also? I'm on generic Inderal and it works, but it's not an all-day type medicine. I wonder if timed-released drugs are more sensitive to the fillers? I know I did not like the timed-release brand name Mestinon, the normal generic works for me!

Having had to switch doctors recently - and in the process losing my wonderful EP who still answers emails during my transition and my kind PCP - this is a lot to think about. My new PCP I've only seen a couple times so I can't say how it'll go. He didn't want to give me refills at first for the meds that are working, but when I told him I cannot function and have to continue he wrote them out. I think he really wants to push me off onto the specialist, and I'm seeing him this week about the flu shot season and a visit to a rheumy (he brought up he knows a good one in case I need it). And I do. I've recently noticed a couple new symptoms the Rheumy I used to see said to watch for so I think it's fair to bring this up with him. If he reads the POTS stuff I bring? I have no clue. I'm taking a few print outs regarding the symptoms I'm having (my Rheumy even put in the med records he gave me a brochure/literature so again I think that's fair) but who knows if this PCP will see it that way. He is constantly pushing exercise and reconditioning. I do what I can. He also doesn't get the recent 20 pound weight gain I had in 3 months when I've been stable for SIX YEARS. (I think it's either the BB or Mirena, but he doesn't like to blame meds). I can tell he's into working out, which I wouldn't mind as much if I felt better. I walk, do housework, laundry, etc. That's pretty good for POTS. I also don't think he gets that I just feel BAD and FATIGUED. I still can't tell if my print outs drive him insane or not.

I'll take this article so she can have it on file - maybe it'll help some poor soul in the future who has Dysautonomia/POTS/OI/Etc! Thanks for posting this! I emailed my Cardio and he said to avoid Epi in short treatments. Sometimes it's harder in longer treatments - so it depends on symptoms/necessity/etc. I wonder if all dentists have BP machines to monitor things? Interesting about the numbing, though. I never seem to be numb enough and just 'deal' which is no fun. Interesting so many of you guys have this issue too. I agree. There's a point you just want it over with and no more shots! I know I need an implant in the future but am putting that one off...it's just OK for now and OK will have to be enough. I'm so glad I had my wisdom teeth out before all of this so I feel for those of you who haven't.

This is why I was tachy the rest of the day, and I had to do errands. Now am exhausted. "However if the patient is taking a non-cardioselective beta blocker (eg Inderal), both beta-1 and beta-2 receptors are blocked and so if they receive a moderate to high dose of epi, epi can not stimulate either beta receptor. All that happens is the alpha mediated vasoconstriction and this results in a rise in blood pressure (no counteracting beta-2 mediated vasodilation can occur) and to make matters worse, the patient will characteristically have a low pulse due to being on a beta blocker. Low pulse and rising blood pressure is obviously a bad combination." I take Inderal...and thankfully I'd taken Midodrine 4 hours before my appointment or it would've been worse. Not sure what to do next time. Didn't even know about this until today!

I did know they use Epi in dental work! Do they all? I know she poked me with a needle to numb things... Plus I'm on Beta Blockers so Epi isn't as useful - I need 'more' of it, technically, if I have a bad allergic reaction the allergist said. You learn something everyday. So what do we do? Help!

Hello - I had to go to an emergency dental visit today (tooth pain from broken cavity) so that's fixed...but I have a crown in my future to avoid a root canal. Fun! I tried explaining to the dentist what I have. She asked if I was 'sure it wasn't from stress.' Sigh. I said no. It's real and likely my autonomic nervous system is damaged and the meds I'm on manage me and I hope I eventually heal blah blah blah. It was hot and I was freaked out (hate dental work) so of course I got hives. I calmed myself so then she numbed me, but it still hurt like crap. I like how I'm sensitive to some meds (small doses needed) but yet apparently not numbing stuff for dental work. Anyone else have this issue? I'm worried about how much I'll need numbed up for the crown now! I wonder why this is? Since I like back I try to plan to take my Midodrine 3 hours prior and be somewhat hydrated. I can't keep running to the toilet. How do you guys handle dental work? Any weird issues?

Are you sure it's a different generic brand? A few times, my wife or I have had the company alter their tablets even though it's the same drug from the same manufacturer. Each time, our pharmacist has been very good about pointing out "hey, they changed the pill, it's now white and oblong instead of round and pink but it's the same stuff by the same company" or similar. If it truly is pills from two different manufacturers in the same prescription, I would be upset too and would want them to fix the problem and make sure that my doctor specified a manufacturer on the prescription from then on. For myself, it would just be the principle of the thing, but I know some people who are sensitive to different mixes of the carriers/binders in different brands of pills. I verified they are different manufacturers - 79 of my 'normal' and 11 of the 'other.' I tried talking to the Pharmacy Tech but she looked at me weird - like I'm just a complaining ninny. No...I'm very sensitive to changes and this is an important med for me right now. They think it's no big deal, so I may contact corporate to see if this is 'standard practice.' Now I have to figure out the drug manufacturers of the generics that work for me!

I didn't think to request a generic name (my insurance only covers generic). 10 of the 90 pills in this RX were different so I picked them out. I'm still frustrated!

Firewatcher - That's true. The good thing is he says he knows a good Rheumy if I need to see them. Maybe I'll take him up on that suggestion (since I did have the serology diagnosis + this new result + new joint/muscle pain). I'm glad HE brought up his Rheumy contact. Just hope he remembers our conversation a few appointments back. It's funny because we aren't hypochondriacs (I've known some in my family - that's not me!). POTS is so bizarre and can include so many things I think we all have to keep up on it.

I think after this I'm going to the 90-day supply as they've never done this...but my local pharmacy filled my Propranonal RX (Beta Blocker) with two different generics! I'm going to try to pick through it and see how many are the 'duds' (the generic I'm not used to and it looks at first glance there are only a few of those). My prior EP said he prefers the 90-day supply as it's better to use the same generic as I get used to it at least for a time - switching back and forth within the same month isn't good for me as I'm a bit sensitive to dose/brand changes. Has anyone's pharmacy ever done this?

I was looking through some recent labs I received to take to my new PCP. I see my Erythrocyte Sedimentation Rate is above normal... I also saw that the Rheumy I saw said I have the Serology of Lupus but no manifestations of symptoms (this was from last year). Recently my ANA test was fine though. So confused and frustrated now...

So glad I resurfaced this topic. Good news for once, Bella! I needed a positive this week. Let us know how things go and what they test you for. You get rashes in the sun? Very red/flushing like Flop described? Flop - I have very British/Irish skin and it likes to get red for a lot of reasons. LOL

OK. I'll bring it up and see what he says. If it's that involved I may have to wait until the Specialist I see in November. Can you explain 'flushing' better if you don't mind? I keep reading 'flushing' - I assume and hope there are others on here who'd like clarification. It's on all the web sites but doesn't go into detail. Right now I'm too warm and feel 'flushed' but that's normal. If i have a glass of wine I feel 'flushed.' But sometimes I'll get random hives and my chest feels flushed, but my face is fine. :/

Helpful people: I still want to have the "Urine Test" to try to rule out MCAD (as I still get weird hives for no reason...but do have bad allergies of the pollen/dust mite/etc type which I know is different than MCAD). What is this test called so I can fully ask for it correctly and try to less annoy my new PCP?

Thank you everyone. It's all very helpful. Firewatcher: I never thought of giving a CD. I'll try that!

My PCP is nice. He's willing enough to work with the specialist I see in a couple of months. But I don't think he 'gets' how bad POTS is. I want to give him a fair chance and know he's waiting on me seeing the specialist in a couple of months. I'm trying to exercise more, which he's pushing, and I want to, but I can only do so much. I need to start working again and we all know there's only SO MUCH energy available! I've only been told my POTS may be post-viral. I've not been to a ANS clinic or anything. I do know Beta Blockers make me feel MUCH BETTER. If I miss a dose I feel horrible. Midodrine and Mestinon in small dosages also help a bit. Is there anything you could suggest I could look into - I'm not asking for medial advice, I know no one here can diagnose me - I'm asking if there are 'types' of POTS that these treatments would benefit more than others? He's never heard of it so the more I can print out and take to him the better, I hope. Thank you so much.

I almost went to the U Iowa Autonomic Department but moved from the Midwest. I was still considering heading back there next year..but now am wondering if it's worth a trip across the country. 150/90...hmmm. I know blood pressure goes up even in healthy people exercising. I was personally told not to worry about anything between 90/60 and 140/95 by my former EP on my current regime. Maybe anyone wondering can ask their doctor if there's a normal 'safe range' with their symptoms/treatments they shouldn't fret about. I know it made ME feel better! I don't know what to think about this. Do you think your POTS has just gotten better? It's been 7 years since you 'got' whatever caused it and my EP says a lot of people have it for 5 or 6 years and it goes away or gets a lot better. I've only had it for about 2 and am not as bad as I was a year ago (with meds). Not so great without meds. Just trying to make some sense of your situation. I don't know how it could all be linked to breathing.

I'm going in to talk to my new PCP about a Lyme Disease Test. I think the 'basic' one isn't that costly and see how it goes. I have to see hom about the flu shots anyway so I have a reason to be going so he doesn't think I'm begging for testing. Now...the theory of LT antibiotics helping is interesting. Who is to know if there aren't other bacterial infections like Lyme Disease? I'm pretty sure my hard-core POTS came on a couple months after a flight, then a horrible flu...so it's reasonable this could help some people. It is SO DIFFICULT to get LT antibiotics prescribed but I'd take the risk, I think, at least for a month or two to see if it helps. For those of us who are otherwise pretty healthy except for POTS (as my doctor says, at least, minus the out of shape stuff)...what is the big risk with a 60 day regimen of antibiotics?

Hang on to the rings and when all is said and done...sell the darn things and buy something AWESOME for yourself. Glad you are getting through this. Focus on yourself and work as much as you can - that's the most important thing!

Dale - I sometimes wonder about Lyme because it can be dormant for a long time - and I lived in the Midwest most of my life and have had ticks! Did you got to a Lyme Specialist? I called two offices in my area and they don't take insurance and it's $1000 for a visit. How do you go about treating/testing for Lyme if you can't afford a specialist? I think it's so bizarre these physicians don't take a PPO! Thanks!