Lovebug

Hey Dani! I am sorry it's been awhile but I didn't realize the forum had a new site (had to find it...LOL!) Regarding Celexa, my doctor ordered 10mg (lowest adult dose) but told me to break it in half. When I got it, the tablet wasn't scored. Being a nurse, I know you aren't supposed to split a pill that isn't scored b/c the company doesn't ensure that each half has an equal amount of medicine. So, in essence, you could be getting the entire dose or none of the dose. I called my local pharmacist & she looked it up and told me it was available liquid so I had my doctor call in the liquid form. I started out taking 2mg and my pain was immediately relieved (abd pain) but came back after about a month. Therefore, I'm now taking 2.5mg and will increase it if needed in the future. My doctor trusts me and told me just to adjust it myself. I use a 3cc syringe to pull my dose up. Please let me know if you have any other questions. BTW: I haven't had any problems with side effects (that I know of, LOL!).

Thanks thankful... very helpful info. i felt drunk this morning, but i'll hang in there Can you take a lower dose? Is the pill scored? If it makes you feel loopy then maybe you could start at a lower dose than normal (like I do) and then gradually increase if you can tolerate. Besides, if the lower dose helps...why not? Celexa 10mg is the lowest dose possible but I started out taking 2mg in liquid form. When I tried to increase it to 5mg after a month or so & I felt so loopy/spacey. Now I've increased to 2.5mg b/c my pain came back so I'm just going to titrate it to my pain. My doctor pretty much told me to do this since I'm so sensitive to meds.

Please just remember that we are all here for you! You are in our prayers as well as everything going on with your husband. I pray that God's hands will be with the surgeons and everything will turn out with the best possible outcome. Please let us know how things are going when you get a chance. I'm sure you will be extremely busy but we will be here! HUGS!

I get different kinds of dizzy spells like the two you describe. But I never sweat with any of my symptoms (never have & hope that doesn't start). I do get "hot flashes" but I'm usually cold with freezing hands. The dizziness (to me) has no rhyme or reason to it but I do notice it's worse when I get my "dot". I can't wait for menopause...I think! lol!

ABSOLUTELY this condition occurs in clusters. I think we just all react a little different to it but most have the typical symptoms of fatigue, pain, and VS changes. I worked more than 10 years in an old state building in Louisiana and there are over a dozen of us that have autoimmune type illnesses...many of which are Dys-like symptoms.

I have problems when I wake up suddenly (such as someone waking me up or from my alarm clock). If I wake up on my own, the problems are usually fewer but not always. I have also been getting the "icy" feeling that you describe. I can't pinpoint what brings them on but I have felt it in my chest which has radiated down both arms (but no where else). Other times I can feel it in my head. Just today I felt it in my hands...almost a burning sensation, but no where else. Oh and my face felt to be on fire a week or so ago. All of these are new but I just attribute them to Dys. Thank God they are very brief. I hope you start feeling better soon!!!

I tried 3 times to take the pill (never made it much over a week). My symptom was mainly LUQ abdominal pain which worsened with the pill. The abd pain is supposedly IBS, which is another form of Dys IMO.

Hi Dani, I have episodes that involve all body systems also. For example, I have extreme LUQ abdominal pain which may or may not lead to diarrhea (sometimes I go back to back) & orthostatic intolerance (high HR, high BP), nausea, gagging, impending doom, icy feeling in my chest that flushes down both arms...basically, lots of weird symptoms. I call these episodes "storms". Usually my HR is really labile (can be in low 60's and jump up to hundreds in a split second). I just had one of these storms on Saturday after I had blood drawn on Wednesday & a stress test on Thursday. Like I stated in another post, I see Dysautonomia as the "mother umbrella" for which all these other specific diagnoses come: IBS (check), fibromyalgia (check), Chronic Fatigue syndrome (check), POTS (check)...you get it. So basically all that I posted means I think you are having digestion problems due to your Dys b/c it certainly isn't uncommon for me. I don't faint though b/c my BP rarely drops (I'm usually high or barely low). Also note that any bowel issues can cause a drop in HR (& likely BP) if you incidently stimulate your vagal nerve. Vagal nerve stimulation can definitely cause you to pass out. Here's to wishing you well!

Is this test absolutely necessary? In other words, does the doc need the diagnosis in order to offer you treatment? If not, why can't you try treatment to see if it works? Either way, I would absolutely avoid the diuretic b/c (even though you aren't hypovolemic) taking a diuretic can make you hypovolemic and also deplete your potassium. With our condition, we are extremely sensitive in ANY shift of fluid which you would likely experience if taking Lasix. Good luck to you and I hope you get what you need out of this!

If you can actually cause yourself to be ill then my best advice to you is "don't do it". You may also want to read the book Mitral Valve Prolapse Syndrome/Dysautonomia (link on my profile) as this book explains that people with this condition have many many phobias.

LOL...that's how I describe it to my family and friends b/c I was diagnosed with fibro first, then CFS, and once I started having orthostatic changes in VS...Dys! But it confused everyone so I tried to find a simple explanation (it's just my theory).

There is a book on this site that discusses what everyone is going through: http://www.mitralvalveprolapse.com/ My cardiologist told me that I would need to start ALL meds using pediatric or neonatal type doses. Not just a low dose, but a microscopic dose due to the sensitivity of my system. He also told me that things I wouldn't think would bother me actually could...such as vitamins! This book may open your eyes as to what we all share.

My cardiologist has the same idea. He told me once that I may have to take neonatal or pediatric doses but no more than that...just depends on me! He also chose Inderal as my beta blocker b/c he says it's mild and a much older (well tested) drug.

I completely agree with your post! As a matter of fact, I think we all have Dysautonomia which is the mother umbrella that covers the other diagnoses...such as fibromyalgia, CFS, POTS, OI, etc. What it boils down to is a dysfunction in the nervous system. The only thing worse than suffering through this would have to be either Lou Gehrigs (ALS) or a terminal condition.

I had blood drawn on Wednesday, a Nuclear Stress Test on Thursday, and been suffering since Friday (with periods of normalcy in between). I have a post somewhere on this page about it. But let me tell you, I've been miserable, heart is going crazy, BP going nuts, anxiety galore (due the heart & BP issues). I'm sure getting blood drawn affects our blood volume significantly even though it's only a small amount.

Well, the SA node has an intrinsic rate of 60-100 so if it's below that, it makes me suspect SA node issues (maybe a block or something but I'm not sure). And I would think that too low a heart rate would cause hypoperfusion to the brain (which many here experience) so maybe it could cause loss of consciousness...? Honestly, the condition that we are all battling baffles me. It seems so complicated and intertwined and we are all different in how we react to things which makes it difficult for doctors I'm sure. Hang in there and visit this site often as I find the posters here very helpful.

MattT, I completely understand the "family situation". You'd think my family would listen to me since I'm a nurse but even my mom still thinks I'm "thinking" myself sick. I keep telling her that I'm not sick b/c I'm crazy but rather I'm crazy b/c I'm sick. I even wore my Dysautonomia Awareness T-shrit form this website on Christmas day to "educate" her...LOL! Note about the ER: my doc has advised me to stay away from them b/c the medical community is generally not aware of dysautonomia or how to treat us properly. He feels that the ER docs (& sometimes unfamiliar GPs) will mess us up. Therefore, I have an emergency plan of taking some of my medication regimen. But, having said that, the nurse in me comes out and any time something happens that is new or severe...I usually advise seeking medical treatment. You should decide based on how you are feeling. Don't let money or what others think deter you if possible. It sounds like you will be taking the right step by at least letting your Neuro know. If he can't help, go to a cardiologist and make sure there isn't anything going on with your SA node (the primary natural pacemaker of the heart). Hope you start feeling better immediately!

Cordelia, Please keep us all updated b/c I've noticed that I have a few of the same symptoms. As a matter of fact, some of my worst symptoms are GI (LUQ abdominal pain, diarrhea, GERD, chest pain, etc). But tonight I had an "episode" and towards the end (in trying to deal with all the frustration), I started to cry. This brought on a feeling of fire in my face that I have never felt before. It had flushed earlier but that was gone. But at this time it burned so bad. My husband got me a cool rag and I kept it on my face till the pain subsided in a minute or two. I wonder if this could be related to your symptoms. Isn't this what some on here have called MCAD?

I agree with lieze...go to the ER if it gets that low and you pass out. But I do have a few questions/suggestions: were you doing anything at all that would stimulate your vagal nerve at the time(such as bearing down or holding your breath)? Also, when you checked your carotid in your neck, did you check one side at a time or both simultaneously? You should never check both at the same time b/c you can cut off the blood supply to your brain (temporarily, of course). You should also avoid "fooling" with your carotids too much b/c you could inadvertantly do a "carotid massage" which causes bradycardia. It is important to note that when you check a pulse and you put too much pressure, you could actually occlude the vessel and thus lose the pulse altogether. This is important b/c it can make you very anxious. However, if you felt as though you'd black out, it isn't likely that you occluded the pulse yourself. I hope you get much better and make sure to let your doctor know that this is happening. Have you had a 24 or 48 hour holter monitor or maybe even a 30 day event recorder?

This is great news! I hope you have much continued success with this. Have you had any side effects from it? Also, did your doctor start you on a low, low dose or just a normal dose? Thanks for sharing!

I took by BB yesterday at the normal time and the diarrhea is from IBS, which I attribute my IBS to my Dys. So if I aggravate my Dys...who knows what will happen! I also have trouble "going" sometimes (diarrhea AND constipation...go figure). I will ride it out but, as you know, the anxiety can sometimes get high during these episodes. Being here has really helped me. I'm glad I found this place.

I've been having a bad flare all day. I had an exercise stress test yesterday and actually felt great the rest of the day (they gave me ~500mL NS on top of the 4L/day that I normally drink). Well this morning I slept late thinking that it'd do my body good after yesterday but I realize this always puts me behind on my "hydration marathon" for the day. Well, I've had a very hard time trying to get enough fluid down. Partly due to orthostatic intolerance, partly b/c I keep having diarrhea (another of my symptoms). So I've been having my typical abdominal pain, headache, dizziness, nausea, high BP when in upright position (I go high, not low) & my heart rate is completely labile. I've been anywhere from 48 up to 117! My BP got up to 147/108. Logically in my mind I know that the stress test caused this but I just need some reassurance from all of you wonderful posters here! BTW: I take Celexa 2.5mg every day, along with Inderal (beta blocker) 5mg in am & 5mg in pm. I'm almost afraid of taking my pm dose due to my HR getting in low 60's when resting. And it dipped to 48 twice but I think I was moving around in my chair when this happened and I held my breath or something...stimulating the vagal nerve. Or at least I hope that's why it happened since it wasn't a sustained rate. Then again, NONE of my rates have been sustained today...lol!

http://www.ssa.gov/dibplan/dqualify4.htm This is SSDI's website which tells you how they determine you are disabled. It says you can't earn more than $1,000/month also. Thank you so much for the link!

Hi Emma! I too have been gettting chest pain alot lately. I have always had chest pain from GERD but this is different. I see a cardiologist for my Dys and he told me he'd keep a close eye on my heart due to family history of heart disease & I've also had high cholesterol in the past. As a matter of fact, I just had a stress test yesterday and I'm really paying for it today. But like thankful says...better to have it checked so that anything serious can be addressed. BTW, if you are unable to stand or walk then you can have a chemical stress test done (called a Lexiscan). It stresses the heart chemically for a few minutes while hooked to the EKG and then a reversal agent is given to bring the HR back down. Either way, you need to have your chest pain investigated.

me either