Amalia01

Navyblue, first let me add my congrats on your degree especially while dealing with your chronic condition. I could not have put it any better myself as I, like a lot of other people here on this forum, am also doing my best to put on the "happy face" on the surface despite what is really going on inside. I can really empathize with the part you mention where every so often as a human being you need to vent about how you actually feel and when you do, people treat you like you are simply feeling anxious or focusing too much on what appears to them to be not much of anything because they cannot "see" what you feel. Trust me, I have heard too many times that I "Spend too much time on the internet". Never does the thought occur that perhaps I am trying to learn more on my own so I can do what I can to get better. On the Family support issue, 2 of my siblings are at least trying to understand, but, my parents simply either don't get it, or, don't want to hear anymore about it. It seems to be a generational thing where like Shatahway mentioned if you're not dying, it can't be that bad mentality. Katybug, boy is that spot on about all of the planning involved for us that others never have to consider , or, worry about. Most folks never have to deal with these what are normally insignificant things in everyday life. Stellaluna, amitriptyline (Elavil) is the first preventative medication that I have been prescribed. I may have to try a different preventative medication. Yogini, it sure does feel awful at times, but, it certainly is nice to have this site where you can talk to others who don't need any kind of "roadmap" to understand what we are dealing with. Like Dancer mentions, you do have to be a strong bunch to function on any level while dealing with all that is happening beneath the surface. Not trying to toot our horns, but, everyone here knows the reality of what we deal with and a pat on the back now and then from our peers is not a terrible thing!

Thanks for the replies. I normally do not like to complain but had to vent. Katybug, Did you have to increase the amitriptyline slowly?

Shathaway, I thought about this post again today because my father, retired MD, just really upset me. I have been having problems with migraines, cluster headaches, and tension headaches a lot lately. My doctor prescribed Amitriptyline for migraine prophylaxis and I have been more tired, spacey, lightheaded, a few more irregular beats and my bp has been dropping upon standing. I had to decrease from 50mg to 25mg. My father ( I am not taking his advice) is telling me to increase it again despite what neuro is saying. He told me that amitriptyline will "take away all my problems" and that I should request Cymbalta as well as it will fix everything. I reminded him that this was a very real condition and what I am experiencing is not psychosomatic. Oh, and my father has not bothered to research/understand my condition at all.

I have also experienced bradycardia in the evening. My doctor ordered a 24 hour holter monitor. I had readings in the 40's and was told this was not a concern. Always check with your doctor.

Just a question. Can a patient take both Midodrine and florinef?

Awesome! That's funny because I thought that might happen. We can all certainly relate to overdoing it when we have better days. I hope the church service/sermon went well. Were you too tired to stay awake? Just kidding. So glad that you are functioning better.

artluvr, Stress definitely exacerbates POTS. How are the two of you doing?

Here are two links that give you details about autonomic testing. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3196175/ http://www.jove.com/video/2502/quantitative-autonomic-testing

How's it going Ancy?

The only thing I can think of is to perhaps co-ordinate with the admissions department in advance. Have them design the tour to stop near a bench, steps, or rocks so you can rest without feeling awkward.

Wow, scary. I'm glad the procedure went well and that you are feeling better.

Crossing my fingers on this one.

That's adorable. All I can say at this moment is that I can totally understand your feelings related to cognitive impairment. Foggy.

You mentioned that your daughter has chills and nausea. Does she have pain in her mid-back region? If so, the infection may have spread to her kidneys and she would need immediate attention. Hopefully this is not the case as she does not need additional problems at this time. I consulted with a recently retired obgyn nurse and she did not know what else to advise. Good points about the bladder dysfunction, IC, culture (possibly e-coli), probiotics, and antibiotics. With this constant irritation of tissue, I am not surprised she is uncomfortable. I'm so sorry your daughter is still having problems with this.

Ugh! So true.

Draven, Both the cognitive and physical limitations drive me nuts. But, the cognitive limitations can be really frustrating at times. I originally thought to use spaceace as my username because I am sooooo spacey at times. It drives me nuts when I cannot process something simple or form sentences. I often do not feel like myself either. Children are more observant than we think sometimes and I think he will be aware of your efforts (and the fact that you truly care about his well being). IMHO. Katybug, Sorry to hear that you are having problems with migraines. I am too. That bites.

Ancy, I will be thinking of you. I wish you all the best and a speedy recovery. Keep in touch.

This link has a little more info about causes of flushing.http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/endocrinology/flushing/

This definitely sounds like a reaction (most likely allergic or autoimmune). Do you have an allergist? The warm weather has increase not only the amount of pollens present but has allowed molds to flourish. Sometimes Benadryl will not completely stop a reaction if it has gotten to a certain point. Consult with your primary as well and see what he recommends. If you are having problems with asthma as well, I would see a doctor as soon as possible. Does the beta blocker seem to aggravate this? Either way this should be addressed.

Cool. Thanks Katybug. I had not heard of Skratch Labs before.

I agree, this time of the year is hard for me too. I just recently started amitriptyline to prevent migraines. I have also been told that I am experiencing cluster headaches as well.

Good points Sylvie. Keeping your blood sugar stable is essential to not stressing your body out even more.

I assume your doctor mentioned compression stockings as well? I also have problems being upright a lot of the time even sitting in a chair. I lean on the side of the couch at times so I am not completely upright. Elevating your feet definitely helps.

Any changes or news?

Artluvr, It is very scary when you are short of breath. I wound up in the hospital one evening because I was short of breath and having episodes of bradycardia. During this time I was also having problems with cervicogenic headaches/migraines as well. I went in thinking I was having a heart attack. My doctor ordered a holter monitor after this. I think my autonomic nervous system had been aggravated and my muscles were tightening in my chest (myofacial). It's always good to have these types of situations evaluated by a doctor.