iheartcats

My appointment with Dr. Grubb is coming up, and I'm wondering what to expect. I'm gathering lab/test results from the last 12-months to send over as I have to go out of state and the appointment is one day so I assume there won't be much time for testing. Anyway - what should I expect from the first visit? I'm taking plenty of questions, and hope to discuss medications as I'm so paranoid about medicines but I know I need more than I am on now as I am no where near 100% of my old self with what I'm currently taking. Any tips/pointers/advice is appreciated.

It seems to help me out sometimes...on really bad mornings it can be very beneficial. It is supposed to raise your blood pressure, but I've heard it can also help 'constrict' your blood vessels (I think) and that's what probably helps me. My EP said not to worry as long as my BP stayed under 140/95 which it has. I usually try to take my BP an hour or so after Midodrine in the AM before work and it ranges from 115/75 to 135/95 on average. And if it's the higher end and I sit for 2 minutes it usually falls 5-10 points. And this is on 10mg in the AM after the hour or so it really takes to kick in. Then I take 5mg at lunch and if really feeling down 5mg at night.

Thanks much, Flop. I'll check with the doctor, but I'm glad to know someone in a similar situation didn't have an adverse reaction. I need to get a second blood pressure machine for my desk at work! LOL

I was hoping to start Zantac before my next doctor visit, but my Drug Interaction checker said to check with the doctor first, as these are contradicted. I did further research and do see the warning about it. I was so excited to try it for my hives/allergies as I read a lot about Zantac + Zyrtec working better together than each does independently. Before taking midodrine, talk to your doctor if you are taking any other medicines especially any of the following: *an alpha adrenergic blocker such as alfuzosin (Uroxatral), doxazosin (Cardura), guanadrel (Hylorel), prazosin (Minipress), or terazosin (Hytrin); *flecainide (Tambocor); *cimetidine (Tagamet, Tagamet HB) or ranitidine (Zantac, Zantac 75); *digoxin (Lanoxin); *metformin (Glucophage); *fludrocortisone (Florinef); *triamterene (Dyrenium, Dyazide, Maxzide); *drugs that stimulate alpha-adrenergic receptors such as pseudoephedrine, phenylephrine, ephedrine, or dihydroergotamine; *quinidine (Quinaglute, Quinidex, Quin-Release); or *procainamide (Procan SR, Procanbid, Pronestyl). You may not be able to take midodrine, or you may require a dosage adjustment or special monitoring during treatment if you are taking any of the medicines listed above.

Faith, my answer is yes on all counts! Mayo & Dr. Low were the real turning point in my illness. He's an excellent listener and paid attention to everything I had written down for him. Based on my tests and the way my illness presented itself, he suggested that I try Mestinon, which has worked wonderfully. As for the supplements, I would say that the difference they make is not nearly as immediate or "spectacular" as the Mestinon (the last time I missed a couple doses of Mestinon, it was VERY apparent!), nevertheless I do feel and think better when I've been on the NeuroHelp for several weeks/months than when I've purposely stopped taking it for a time (just to see what happens). The only difference that I notice when I've been taking the protein is that my immune system seems to protect me better. I hate the fatigue feeling, also, and never knew what caused it really. Good post. Now I have a bottle of Mestinon my doctor prescribed that I am still hesitant to take (I know, I know, but I've had a bad reaction to medicines before, most recently Xanax, and I'm freaked out adding new ones). I think I need it (especially if it helps the fatigue)...so did you notice a difference right away with Mestinon? What was your dosage, if you don't mind sharing? I would like to start it this coming weekend and if it can really help this awful fatigue, it's worth it, I think.

I think I'll start with 75mg twice a day (that's the box I grabbed, anyway!) so I have room to increase dosage if I need to. It's cheaper if I get it through insurance so will ask the doctor if I should increase next month. Thanks so much!

My Tryptaste test was negative (fortunately - and as expected - but Allergist wanted to be safe). I've been on Zyrtec and am still getting random hives, albeit not as bad as before. Still annoying, though! My Allergist said give Zyrtec a try and I can always add Zantac (both of these meds are OTC in the States) if the hives didn't improve enough. Well, they are still bothersome enough I'd like to give Zantac a try. I didn't ask what dosage, but am assuming whatever the box says. For those of you that take an allergy medicine + Zantac, what was your starting dose? I'll probably just go by what is on the box until my follow-up appointment in a couple months and go from there. But I hope it helps! These hives are frustrating.

I do the exact same thing. Sometimes if I drink a lot and lay down a good hour or so, it gets around 90, at least, for some relief. Of course lying down isn't always possible, but if it is give it a try. If I am coming down with a cold/flu/etc. I also get these symptoms. If I am dehydrated, they start coming on like this too.

I was relieved after my POTS diagnosis. At least I knew I had something - all my crazy symptoms no one could link and I was running from doctor to doctor was finally explained in one diagnosis! Well, exciting for you! Let us know about the genetic test (always interested in what those show!) and looking forward to your post on Doc Friday. It's hard to find a great local doctor (I have one in the Chicago area in case anyone needs info)... I am not that familiar with EDS but hopefully they have a good treatment for that, too.

Right now I am just taking Zyrtec in the PM. I switched from Allegra in the AM because the allergist said Zyrtec would help with my hives more than Allegra (I think it is). He also said if my hives became severe again, I could do Allegra in the AM and Zytec in the PM. Not ideal, but if my symptoms get severe it's an option. Fortunately, they haven't been and I told him I'd rather avoid that as I'm sensitive to medications. So I was just on a Zyrtec + .25mg Xanax and that didn't mix well for me. I'm feeling better today, just really fatigued (because I was so tachy and things yesterday). So it looks like it was the Xanax + Zyrtec combo because nothing else has varied.

I've never tried a higher does of Xanax...so from what I understand what I took (.25mg) in addition to Zyrtec may have made my does similar to a 'double dose' or similar (ie .50mg)? Hmmm...I am starting to feel more 'normal' tachy, not the excessive levels of earlier today. I may have pushed it too far. Good to know. I'm liking Zyrtec for my allergies more than Allegra, but it doesn't seem like it'll work with Xanax. Found out the hard way!

I feel 'ok' - just some generalized stress (and who doesn't have that) - but it just added up last night & I couldn't sleep. Well. I'll avoid Xanax + Zyrtec at least until I get used to the Zyrtec (I always give new meds a month). Why I am so sensitive to meds is a whole other issue I think a lot of us share. But yes - D is not a good thing for me (and a lot of POTS patients, I suppose). Although a Latte does me WONDER in the morning and I'll take that happily over not being able to take D stuff. And I do hope I'm not coming down with anything. I don't feel like it...fingers crossed.

Were you on it everyday or almost everyday? I've probably taken...maybe 7 in the last 5 weeks. I hadn't taken one for 2 weeks until last night. Maybe this isn't the medication for me - I'd rather not be this tachy again and I guess I can get by without taking it for now since I went 2 weeks, anyway. My doctor said I wouldn't have any withdrawal from minimal occasional use - so I hope I don't. I try to be careful.

I checked, and it's regular Zyrtec. I've accidentally taken a "D" type thing once and that was not very good. Zyrtec was fine in and of itself for a few days, no worse symptoms than usual. Nothing got really out of the ordinary until the Xanax last night. Well, I'll hope I improve in the next couple of days and stay away from Xanax for now. Not sure what else I can do. Just hoping it gets out of my system fast. It's been about 18 hours now. Hmmm. Maybe the two together were just too much of something. Frustrating, as usual.

Agreed. Copies of tests - no need to be retested for stuff you've had recently. Good luck!

I recently switched from Allegra in the AM to Zyrtec in the PM for my allergies. The bottle and doctor warned it could cause drowsiness. I also take Xanax as needed - I haven't taken one in a couple weeks but took one last night (typical POTS-style feeling of over-stimulation and couldn't relax). I've never taken Xanax and Zyrtec together, and while separately they've been ok, today I've been way more tachy than usual. It's uncomfortably high, especially standing. Could the combination of the two medications cause this? I think I'll avoid taking Xanax again unless absolutely necessary if so...should the Xanax (.25mg, smallest dose available) be out of my system soon? My doctor said occasional use of Xanax wouldn't cause rebound/withdrawal symptoms, especially at this low dose, so I don't think it's that. Thanks for any help - I hate being this tachy - I'm worn out.

Trying to avoid people/ignoring people who don't really believe I am ill (and you guys know that vibe) helps overall. It's hard to do though. I look forward to my favorite TV shows...when I feel up to it I like to do a bit of housework as it makes me feel I've accomplished something. Hugging my cat works well too!

This is the thread that has a lot of info: http://dinet.ipbhost.com/index.php?showtopic=11405

I'm back from the allergy test - my histamine control really blew up and was itchy, but I have no food allergies. I've been very careful about nuts for no reason - which is frustrating because I had to give up desserts when going out to eat. Now the allergist feels confident I can eat away...the hives aren't really tied to anything specific. Chocolate cake is coming up... He's seen this before (random hives)...and the heat hives (shower, hot, etc) are from Mast Cells leaking, just like we've talked about. He is wondering if it's tied to POTS/Autoimmune...and he has seen people with my symptoms (the allergy-hives part) get better in a couple years and they go away. Makes you wonder! I have been tested for standard allergies before (Outdoor Mold and Cats are mild to moderate, Dust Mites and Pollens are severe). My cat doesn't make my symptoms worse so he's staying (of course!) but no more cats unless I get allergy shots. For my more standard allergies he's comfortable starting me on an allergy shot regime after I see Grubb, even if I am on a Beta Blocker. He does want me tested (that Tryptase thing, ANA, and IGE) to rule out Mastocytosis (usually shows on the Tryptase). And the others as standard test he does for something that's problematic with Autoimmune conditions. I've tested positive for ANA before, so who knows what's going on with the Autoimmune stuff. It's hard to pin down with POTS, I think. He agrees it's probably not Mastocytosis, and isn't familiar with MCAD but at least was interested in hearing about it. I may drop off some paperwork for him since he didn't brush it off. I am switching from Allegra to Zyrtec because Zyrtec can work better for skin hives/allergies (grrr..I just bought 90-days of Allegra, too!) and if that doesn't do it to add Zantac. If it continues to be really bad, or gets really bad seasonally, I can do Allegra in the AM, Zantac in the AM, and Zyrtec in the PM (but that makes you tired so I feel it's worst-situation treatment). It'll be a week or two before the blood tests results so we'll see how things go. I hope everyone keeps contributing to this thread because even if we don't have Masto or MCAD, allergies seem tied to POTS/Autoimmune disorders, etc. and keeping them under control can really be helpful for our symptoms. I've heard Grubb likes to keep allergies under control, too, so looking forward to seeing him armed with all my info!

It is frustrating. I feel for you. I just hope we all heal, eventually - I'm sure we'll never be the people who take all the little things for granted.

It went ok, actually! I have such random hives the doctor doesn't think it's tied to food, so I'll take that news...I'll post an update in the MCAD thread!

Yeesh. I can see why POTS and similar conditions go undetected for so long. Mine seems a bit off (why would I have a 100+ BPM for 20% of the day, while not exercising, and in my 20s)? That's doesn't seem 'normal.' Wish I would've asked for a copy of this in 2005, but back then I just took what the doctors had to say as fact. Now I've learned.

I am off my Allegra for my skin test which is tomorrow - I've been off since Thursday and today I had a random hives outbreak. I was not eating or drinking anything or doing anything out of the ordinary. I got hives on my arm/chest/face that burned, itched and were red. I started to panic (thought I couldn't breath) so I laid down, took deep breaths, and calmed myself down somewhat and 90% of the hives are gone now and I am feeling better, just really fatigued. How do you guys handle random hives not from any source that you can tell? I'll mention this to the allergist, but it's so bizarre. I can also use my fingernail to 'mark' my skin and it stays around for awhile now that I'm off Allegra. I've been careful about what I use and eat since going off my Allegra, just in case, too. I'm trying to tell myself only about 14 more hours until my test. I so wish I could take a couple Benadryl, but all this work will be for naught. My POTS has been 'okt' for itself for the last few days, pretty typical, but now I'm feeling extreme fatigue and a bit achy. I assume this is from the hives outbreak. I am so frustrated and upset! And I think I almost had a panic attack (which is rare for me). Would a panic attack cause shaking, nervousness, upset stomach, and a really weird feeling of impending problems? Thanks for listening. This has been a rough few days.

I'm seeing I had a lot of similar as you guys - 120s standing (up to 160-something as a high) and lows in the 70/80s down to around 58 while sleeping. Makes me wonder because I hadn't been diagnosed with POTS (or having any really noticeable symptoms). Kinda sad I went around for a couple years with high standing HR and never noticed! My doctor and I wanted to try a 30-day, but insurance was being a pain about it. So maybe we can try again. I'd still like at least a 24 to compare it to the 2005 results. Geez. You'd think if I started to have symptoms four years ago I'd be doing better (from what you hear) but maybe not because isn't the 3-5 year recovery AFTER diagnosis? If I was feeling overall ok in 2005 (just starting symptoms/tachy), well...who knows. Maybe I just don't remember what it feels like to feel WELL.

Thank you much - I did a bit of research and since it was a tack (not a nail so not very deep), indoors, etc. I really should be fine. And my Tetanus was 5 years ago so it's supposed to last 7-10 (overall consensus). Dang such a little thing can hurt though!