iheartcats

I take my Zyrtec now (and will be taking a Benadryl tonight because my allergies are out of control, but they make me very tired so not for day use here!). I used to take Nasacort when I lived in the Midwest and thinking back, I'm pretty sure it helped a lot as I didn't have these awful allergy headaches when I took it. I checked and my insurance does not cover Nasacort - it covers generic Flonase, but I was told they are very similar so I picked up my RX for it. I hope it works for me. I'm glad to see the nose spray helps you the most so I'll start my new one tomorrow and see what goes. I was told it's localized so side effects are minimal. Fingers crossed! And Spring is my worst season.

I've been feeling worse the last couple of weeks than I've felt in a long while. I've figured stress, fighting a cold, this or that...but since nothing has tremendously changed the last few weeks it didn't make a lot of sense. Today I noticed the pollen forecast has been 'very high' the last couple of weeks, I'm sneezing like crazy in the mornings (10+ times in row!), stuffy achy head, etc. I'm taking my Zyrtec + Zantac which I suppose is somewhat helping. Could allergies be causing more fatigue, dizziness, and general malaise with the POTS? It's so awful! I'm tired of feeling this crappy. I might throw in a Benadryl before bed to see if I wake up feeling a bit better...I usually don't mix antihistamines unless I have an outright reaction, but my allergies are super bad right now and I want to know if they are making my POTS flare up.

Interesting. My Grandmother has Fibro, my Sister has POTS symptoms, we all have allergies...wish people would take the mast cell stuff more seriously! Well. My Zantac and Zyrtec are helping so I'll continue to take it!

I can only tolerate 30mg of Mestinon, twice a day right now but I think it does help. It's hard to pinpoint what it does for me but I just felt better after a few days on it. Less muscle cramps/aches and better bathroom visits. I had IBS many, many years before POTS (so who knows if that is related!). I think I get backed up a bit too easy and this has improved on Mestinon. As for Vitamins...last I had my D checked it was good. I assume they checked Calcium, I'd have to dig it out. I eat way too much dairy and drink a lot of milk. So I think I get mine that way.

There's another test for Celiac Disease that you might want to discuss with your doctor. It's the tTG (tissue transglutaminase) test. I was positive on this but not on the ones you have so they have me on a GF diet for three months. From what I understand, you have to still be eating Gluten to make this test accurate. http://www.celiac.com/articles/57/1/Interp...ults/Page1.html "In celiac disease, the body produces two types of antibodies that attack tTG: immunoglobulin A (IgA) and immunoglobulin G (IgG). Measuring the IgA form of tTG antibody in the blood is more useful in detecting celiac disease because it's made in the small intestine, where gluten causes inflammation and irritation in sensitive people. Levels of the IgG form of tTG antibody, on the other hand, are less specific to celiac disease, but may still be useful in diagnosing the condition in people who are unable to make normal amounts of IgA antibodies." http://kidshealth.org/parent/system/medical/test_ttg.html Hope this helps a bit. I'm still figuring things out myself and may have to get a biopsy this summer.

I've had luck with propranonol so far...20mg/three times a day on average.

On occasion mine does this. I take a low dose of the Beta Blocker, too, so I think it's more likely to go a bit higher than for normal use on me, anyway.

I have had ANA tests come back normal and then 'positive' - they tend to do them every six months or so and they vary. So I guess I see how it can take years for an RX. I was told to just 'watch for symptoms.' I have very dry skin, am using my lip stuff all the time (and heavily at night) and very dry mouth. I always thought that was just normal and then blamed the dry mouth on POTS. Maybe it's not? But I can't get a definitive answer. The eye thing sounds so annoying! I feel for you. During one of my eye exams (I only go every 2 or 3 years) the doctor said my eyes were 'very dry' and I guess I hadn't noticed/blamed that on allergies. Do you always 'feel' the dryness, if that makes sense? I have a hard time even understanding what to look for! I don't see my Rheumy until June but I'll try to ask for more details about Sjoergen's. At least we aren't alone, there's that, right?

They still don't know about me for sure (will anyone ever)? But I might have Sjogren's. It is rare...but rare is not impossible...to have it alone. Some symptoms just stay mild (dryness/aches/pains). I don't seem to have many issues related to Sjogren's, really...unless the muscle aches/pains I get are that and not POTS but those are on and off. Good luck and let us know what you find out. Would love to hear it!

I had a new generic on my last refill (haven't use it yet - but I think a few on the board use that generic and it seems to work OK)...they couldn't tell me why. It's just the one the pharmacy could get and it doesn't seem to be a very commonly used medication. I hope you are able to get some form of the medication soon!

Thank you everyone. I keep my stuff in a drawer in the bedroom (away from light/humidity). I figured that was an odd date - one year from fill date can't always be the exact expiration! I'll try to find a local (nice) Pharmacist to ask if the worst thing is less potency for this one. I am careful not to take expired BCP (per my doctor). But I've never asked about my sleeping aid.

My RX was filled in April 2009 and says "Expires April 2010, Discard." The problem is this is one of the medicines I don't use all the time (Ambien). For my old insurance, it was much less costly to do a 90-pill supply mail order. I knew this would last me 12-18 months. Well, I still have a lot of this bottle left and yet it says to throw it out. It looks like this old pharmacy just put a one-year expiration date on all pill medicines. I know that likely cannot be accurate. What are the chances all my meds would expire exactly one year after the fill date? Is there any way to find the real expiration date? I feel it's probably been too long for them to back track to the original bottle. I know there are a few meds that are not good to use after expiration but is Ambien something that may just lose potency? It's not a cheap one to fill (the generic gives me headaches so I have to pay the very big difference for brand!).

My blood tests came back positive for Celiac (which is a big boo for me because I'm a bread/pasta/baking person). It's been hard and expensive to try to be Gluten Free but I've managed for 1.5 months. My weird body aches/pains have decreased about 90%! I also feel less bloated. As for any improvement to POTS? I don't think so yet...but I've been told it can take a long while to start actually healing the insides. I'd really prefer to have the biopsy to know for SURE. I assume if my body aches have really lessened within two weeks of going GF I should stay GF no matter what the biopsy says. But at least if I know if it's damaging my intestine or not I won't have to be so severely strict with cross-contamination, having a 'bit' of pie, etc. I'll talk to my Rheumatologist about the biopsy and getting it approved and all that when I see her in a couple of months. She usually feels if you feel a lot better, you can skip the biopsy, but I personally think I want to know definitively!

I guess we'll just have to keep our eyes on it. Here's some info from the CDC: http://www.cdc.gov/ncidod/dhqp/bp_xmrv.html I wonder how hard it is to see if you carry this virus? I'd just like to know!

I now have a 'weekly pill box' that is broken down by day, too. I guess with this I will KNOW if I took my medicines that day or not. I'm really not fond of these memory problems. I'll look into the cell phone alarm, too. Thanks for making me feel better. Sometimes I feel like I'm losing it!

I take 20mg of Propranonol three times a day and Midodrine three times a day. My Midrodrine dose usually goes 10mg/5mg/5mg. My doctor said the Midodrine helps my BP stay stable while taking Propranonol. Have you discussed with your Doctor if there is something you can take with your Propranonol if it's helping your other systems? I don't think my low does of Propranonol made me gain much weight - I'd say 5 pounds? I know it was a bit because I monitor it closely, but I feel bad if it made you gain a lot. I had a Birth Control situation that made me put on weight. No fun! Let us know if you talk to your Doctor - would love to know what they say about getting your stabilized.

Hmmm. I was busy and forgot to take out my 'cut' Mestinon tonight. I read the instructions and if you miss a dose it says to not double it and wait for the next regular dosage (which is tomorrow). Of course I get myself paranoid because my heart just skipped a few beats (but I'm telling myself everyone's does that once in a while...it's NORMAL). I also took 10mg instead of 5mg Midodrine because while running errands I was feeling faint, but I'm allowed to 'adjust' my dosage if needed like that. Usually 5mg is plenty, but today I was feeling a bit off. This was before my Mestinon was due so I know this wasn't the fault of the missed dosage. Has anyone just forgot to take a medication before? Brain fog/busy and all that.

You know how certain diseases humans get - like Sickle Cell Anemia if they have two copies of a bad gene - yet if they have one copy they are protected from Malaria? Per Wikipedia (hey, it's quick to look up, but this is the general idea): "A heterozygote advantage (heterozygous advantage) describes the case in which the heterozygote genotype has a higher relative fitness than either the homozygote dominant or homozygote recessive genotype. This selection favoring the heterozygote is one of the mechanisms that maintain polymorphism and help to explain some kinds of genetic variability. There are several cases in which the heterozygote conveys certain advantages and some disadvantages while both versions of homozygotes are only at disadvantages. A well-established case of heterozygote advantage is that of the gene involved in sickle cell anaemia." I wonder if some forms of Dysautonomia/POTS could be somewhat genetic related (ie: certain forms/copies of a gene protect you say from Botulism but certain forms/extra copies make you prone to POTS) I just find it intriguing they think a toxin could be causing Dysautonomia in pets...and humans went through a huge plagues relating to a toxin yet some made it/were unaffected. Any scientists want to chime in?

This is so interesting. I just found this article. Note it doesn't affect all dogs exposed (sound familiar)? What's sad is the dog/cat version is so untreatable. "The autonomic nervous system controls involuntary body functions such as digestion, respiration, saliva production, blood pressure, gastrointestinal function, sweating and metabolism. Dr. Kenneth Harkin, associate professor of veterinary medicine at Kansas State University, said a disease, called dysautonomia, seen primarily in dogs in northeastern Kansas and Missouri kills by destroying this system. As the autonomic nervous system is destroyed, dogs lose digestive function, have trouble urinating completely, and vomit uncontrollably, among other signs. "Only a few cases are mildly affected, where the dogs can be medicated and survive," Harkin said. "In general, it's almost routinely fatal." Harkin said the cause for dysautonomia is unknown; therefore, there is no prevention available. Harkin said one of the prevailing theories is that it is the result of a clostridial toxin, possibly from Clostridium botulinum. Clostridium botulinum is a soil-borne bacteria that can be found in rotting food and decaying flesh and may produce a variety of toxins. He said some of those toxins can kill nerves. Harkin said clostridial toxin production may be geographically limited, which would explain why the disease is primarily seen in Kansas and Missouri. Harkin said the only research on dysautonomia being done is at K-State and the University of Missouri, because these are the only two states affected. He said it's difficult to acquire funding for canine dysautonomia research since the disease is not a nationwide epidemic and has no human equivalent. He said the disease is common in the area and estimates Kansas has about 100 cases per year, most in the northeastern corner of the state. Most of the dogs affected are younger than 2 years of age and come from a rural environment. One aspect of dysautonomia that makes the cause of the disease especially difficult to identify is that it does not affect all exposed dogs."

In a lower dose Mestinon seems to help my muscle pain and BP. But at a higher dose it makes me have muscle aches and weakness/fatigue. Were your arms hurting BEFORE Mestinon? If they are hurting worse you may need to adjust your dose (of course talk to your Doctor/Pharmacist)...when I tried the 180mg timespan I felt like a log all day. Couldn't move much at all!

Well I didn't realize 15mg was a somewhat big jump - I had a few of the more standard side effects the Mestinon site talks about (weakness, fatigue, mild upset stomach, mild muscle aches). I had those symptoms and they were quite severe when I took a 180mg timed-release. That's supposed to kick out 60 right away but it sure hit me harder than that, so I won't use the timed-released as it just doesn't work for me. And the side effects lasted all day that time! After about 4 hours I felt better so I'm fairly certain it is the Mestinon. Especially since I've had similar effects (but worse) with the timed-release version. Tachy - I wish I could try it again to make sure! Not today. I'll see if I can get up the nerve again. It's hard to break the pill into anything but '4' as it is crumbly. It's not timed-release so I can do it into 4, but smaller is impossible. I guess if 30mg is working, I'll accept that! I always wonder cutting it - I assume I get 25-35mg/a dose. I know it's not perfect. But I maybe today I cut it so it was more like 50mg when I was aiming for 45mg. Still too much!

My doctor wanted me to try to go back to 60mg/Mestinon twice a day. I'm currently on 30mg/twice a day which seems to help me a bit. Of course I went up to 45mg this morning (I know you guys understand - I wasn't going to jump into doubling it!). I had the weird muscle cramps/some weakness for a couple hours after dosage. Fortunately, it wasn't timespan so the half-life is only 3-4 hours so it was bearable, just annoying. But what a small increase and such a noticeable change of how it worked for me! I am 90% sure I wasn't 'imagining' it. I can never prove that, but you get so tuned into things when you have our types of issues. You know when something is completely different. I was able to push through symptoms this morning, but I think I'll stay on 30mg/twice a day and just tell my doctor the increase had negative effects next time I go in. At least I tried, right? I'm still amazed how a small change can be so troublesome sometimes. How is that normal?

I drink a bizarre amount of milk. Always have. My vitamin D levels were great last test. They were like wow, you must get your dairy! Oh, yes, I do! G2 is OK. I tolerate the grape and fruit punch. I prefer the 'packets' you pour into the water, though, for some reason. It tastes a little better. Water, also. I rarely drink soda (a treat). I do have a vanilla latte everyday almost in the AM!

This is all very confusing - I wish we had those Star Trek devices to scan us and tell us what is wrong! I was worried about MCAD because I have bad allergies, random hives, have had IBS, etc. My former allergist read about MCAD and found it interesting. I have 'normal' allergies and have taken allergy pills for years. I also started to get weird random hives we can never place on anything, even when I'm hot I sometimes get them! They put me on an H2 to help this (low dose) and it does somewhat. From what I understand, that does not necessarily mean MCAD...random unexplained hives are more common in women than men and my allergist had seen it frequently. I did find out I have Celiac Disease (at least two blood tests came back positive for it now). I think I have less hives now that I'm on a Gluten Free diet. And less bloating. I do get occasional flushing, especially when upset/hot/etc. But I know that can be POTS or even stress related. It's hard to differentiate.

My allergies are bad this spring and I've had more fatigue...it's noticeable and annoying! I can feel myself pushing myself more. For me, I've had POTS long enough to know allergy flares make POTS worse. I did hear about Zyrtec making a very small segment of the population drowsy - my PCP had me take it at night when I first switched. It doesn't make me tired at all, but it's a known symptom for some. I'm not a good napper, either. Never have been. A nap is rarely helpful for me. I hope you can figure out what's making things worse for you and you improve really soon!