Noreen

Glad your skin is calming down and feeling better.

sorry the singulair didn't work out as hoped and I truly empathize with the migraine issue - glad it is over. I am happy you have a doc who is listening to you at last and caring.

Let us know how it goes.

noreen

Hi Everyone, Just a small brag because I am totally excited... I received an email this morning asking for permission to use a photograph I took of a small butterfly last year called an Eastern Tailed Blue. The butterfly is only about one inch square, or smaller... here's my picture, and keep in mind, that it's sitting on a blade of grass to get an idea of the size.

The book is funded by the Univ. of Minn. department of entomology. I can't wait to see it published!!!!

Nina-

that is so cool!

I love butterflies and your picture is just awesome. I live in Karner Blue territory but never have been able to capture them as you have.

Wonderful to hear good news

Brian-

My tilt table was done at Ellis Hospital in Schenectady.

Not a lot of input ,Julie, but plenty of cyber hugs. I do agree with Dr. Rowe on switching to the doxy for a time. The lower dose of minocycline doesn't seem appropriate for a new exposure. I suppose, if the patient had no other issues, I might agree with the doc substitute but in this case he should take a dose of ego lower something and take the advice of his betters - Dr. Rowe.

wish I had your advocacy skills, Julie. Again, mack is lucky to have you.

{{hugs}}

noreen

Baby Ben is here as of 10:20 PM. Came out active and screaming Erika recovering nicely. All is well.

Thanks everyone for your prayers, thoughts, support and kindness over the past months.

Welcome Ben!!!

Congratulations Erika!

I am sure the rest of the family is giddy with joy - congrats to all!

I'm wondering how you and your mum handle these sensations. What you and she take for it, if anything. Emotionally they take a lot out of me.

Have you had a skin biopsy? Does your mouth burn (mine also tastes like metal sometimes too)? Do your hands and feet turn bright red? Do you have problems with cold temperatures and pernio/chilblains/purple feet?

I have an appt with my neurologist next week. He sees me to treat the "small fiber neuropathy." I think I mentioned that this was a diagnosis of exclusion (meaning the tests weren't positive, but I have all the symptoms for SFN). He might suggest for me to take tricyclic antidepressants. I just want something I can take that won't make me drowsy and that isn't narcotic. I tried Lyrica and it worked for myul pain wonderfully, but I put on a lot of weight and it really flared all my symptoms when I tried to get off of it. Most people with erythromelalgia have it solely affect their feet, maybe their hands or face, never their whole body. For these folks patches often work (like lidocaine or ketamine)

thankful-

thks for your wonderfully complete post. I am being worked up for small fiber neuropathy by my new neuro by so many of the symptoms you mention - such as not being ablt to sleep with your feet under the covers and the horrible itching keeping you awake. I use to be on Cymbalta 60 mb bid and it probably dampened down things. Generally I use to blame way too much on Raynaud's but at my last rheumy appointment I looked down and said OMG as my feet were bright purple. I already use 3 lidocaine patches a day on my wrist and neck and that is the max dose.

noreen

Blue-

hope you get some relief soon. I am so glad that your new GI guy 'gets' PoTs.

Let us know how you make out.

I know how bad the brain fog can be and how scary and lonely when one's brain has gone AWOL.

{{hugs}}

noreen

Anyway, I'm really struggling with this increase in symptoms. I hate this so much mostly because of mental symptoms. Once I stand up it is like my personality changes. I don't feel like myself, don't think like myself, don't find things funny, do things I would never otherwise do, ect. Brain fog is the worst because I am an academic and even outside of those situations I rarely have anyone that can help me make important decisions. Not thinking clearly is like torture. It is bad enough not being able to do all the physical and spontaneous things that I used to enjoy (adventure sports, physical job, ect.) that were a big part of who I was, but without my mind working the way it should I'm just miserable. At this point I just wish I never had to stand up!

{{Effie}}}

I so understand - I call it the Algernon Syndrome - (as an academic I am sure you remember the short story and play "Flowers for Algernon"). It can be so hard knowing that if you stand up you may not be able to remember that idea, if you have to go to the bathroom, your brain may have to reboot when you lay back down. I feel like I lose half my IQ points within 15 minutes especially if the temp is above 72 degrees.

I'm sorry I have no great idea to help but I can offer plenty of understanding. Before I found this forum, I kept wondering whether I should be tested for alzheimer's yet one sees docs and you're sitting down and they don't quite get it.

My son's college graduation is on Thursday in Baltimore. The ceremony is outside and it is supposed to be in the 90's Wed. and Thursday. Any suggestions on how to survive 4 hours sitting in the sun? I'll take extra salt tabs., my usual meds, wear a hat, drink lots of water. Is there anything else?

As noted you would never get a cooling vest in time but this is an idea I've been thinking of using in a pinch - they sell 'ice blankets' in grocery stores around here - basically about 12 iinches by 20 inches which you freeze and then are to lay on top of your cooler when picnicking. Freezing a couple of these and then using them with a light scarf or blanket might really help keep you from crashing.

Where I now live though is a blessed 60 to 65 degrees almost year round....if anything my feet will get cold ~ it's near the ocean and kind of damp. Sounds like I should count my lucky stars I don't live in a temperatured climate that is more challenging. I again thank you all for sharing your experiences -- it's helpful and I truly appreciate it ~ :-)

60 to o65 year round? hmmm. How's your barometric pressure? Your locale could knock Hawaii out of the running for me.

We just had topic 'Has anyone moved due to PoTS?" and your climate is what everyone is after.

hope you have a good evening,

noreen

In regards to this issue I would advise you to call your local hospital and emergency services. I called mine in regards to this bracelet and under no circumstances would they use this devise, even if I was dying. The hospital symtoms won't even let these devises into their computers and the emergency services have no equipment on board to use this either. I called the company to ask them if they knew where in the US they would take this and the gentleman I talked to stated a small area around N Carolina. He instructed me to call my area to see if they would use the devise. I sent my bracelet back upopened since it could not be used where I lived. I hope you get a better response, but I would call in your area to make sure it can be used, or else you're relying on something that won't work. I now carry my important medical records with me and I wear a medical bracelet stating where my important medical information is. It seems backwords in this day and age of electronics, but we have to be careful and make sure what we use for our condition works.

Maggie

Maggie-

Thanks for the heads up. It does seem totally warped that they can't insert a USB storage device but there it is -

Wonder if we could each get our own UPC code and they could scan us -

the system is unworkable the way it is - it is harder than ever to get records from docs as they transfer over. I don't have the energy to call and call and follow up - if I do that, I cannot eat or clean up after my son. Going to get them and carrying them in the heat takes another three days out of me.

It also helps to wear a blatantly obvious medical bracelet in public so people don't wonder so much why I'm squatting for no apparent reason.

Thanks a bunch, simmy.

I was a day or so later ordering so it is probably in today's mail.

And remember the one liner - "Are you accusing me of medical bracelet fraud?" if anyone is daft enough to say anything.

Has anyone actually moved to a cooler climate? Just curious.

Anyone ever wonder who wrote the Wikipedia article on POTS?

Under treatment, it actually recommends a change in environment.

Some patients report that symptoms worsen with changes in barometric pressure. (For instance, before a thunderstorm.) These patients may find relief by moving to a new location where barometric pressure is relatively stable, i.e. San Diego.

Interesting - im being offered Humira for Ankylosing Spondylitis and im considering it as long as it doesnt worsen POTS. However perhaps elevated TNF alpha might provide a link between chronic inflammation and disregulation of the autonomic and circulatory system - TNF alpha is a potent vasoconstrictor, neuropeptide Y has vasoactive effects and substance P is a potent vasodilator.

Rama-

the enbrel was taken early in disease course and did protect my bones. At the time there were no recommendations for taking it early but I didn't see a lot of alternatives as my pred dose was reaching as high as 40 mg. Now there is more information available for you to base your decision upon. I think you will find this excerpt from the Journal of Neuroinflammation interesting.

Of particular relevance to intersections between neuroinflammation and neurodegeneration is the ability of TNF to increase expression of interleukin-1 (IL-1), which in turn increases production of the precursors necessary for formation of amyloid plaques, neurofibrillary tangles, and Lewy bodies. More recent data have revealed that TNF, one of the few gliotransmitters, has strikingly acute effects on synaptic physiology. These complex influences on neural health suggest that manipulation of this cytokine might have important impacts on diseases characterized by glial activation, cytokine-mediated neuroinflammation, and synaptic dysfunction.

full journal article

The researchers were working with Alzheimers patients so this article is not going to be everyone's cup of tea.

I, too, have all the symptoms of CFS and have had for 20 years although the dx I was given then was fibro. Since then other dx which can cause fatigue have been added.

I went on Enbrel the anti-TNF when it first came out and was on it for six years. It did wonders for my fatigue. I stopped it because of increasing migraines and a change in my visual field - symptoms which I now attribute more to the dysautonomia rearing its head as an early 'change' occurred. Your post about your doc's ability to test TNF levels was intriguing and I wondered whether the rheumatics were considered as an alternative to the antivirals.

BTW, I do not endorse the overuse of these drugs and have a problem with the marketing of them for trivial ailments but your CFS is far from this category. On a cautionary note, all is not known yet about these drugs as to the effect on the thymus gland.

Recently I went to the U of Miami to see Dr. Nancy Klimas, CFS/ME expert and immunologist. I found out that I have defective natural killer cells that are not fighting viruses. As the bad killer cells do not general white cells when they should, it then appears I have no inflammation. Her advanced, expensive tests found 14 times the normal inflammatory response to viral assaults and extremely high TNF readings - all showing massive inflammation.

Hi blue-

The term will be unfamiliar to some forum members so I was looking for a definition to post. The following is from MedicineNet -

Erythema nodosum is a type of skin inflammation that is located in a certain portion of the fatty layer of skin. Erythema nodosum (also called EN) results in reddish, painful, tender lumps most commonly located in the front of the legs below the knees. The tender lumps, or nodules, of erythema nodosum range in size from 1 to 5 centimeters. The nodular swelling is caused by a special pattern of inflammation in the fatty layer of skin.

Erythema nodosum can be self-limited and resolve on its own in three to six weeks. Upon resolution, it may leave only a temporary bruised appearance or leave a chronic indentation in the skin where the fatty layer has been injured.

There are several scenarios for the outcome of erythema nodosum. Typically, these areas of nodular tenderness range in size from about a dime to a quarter and they may be tender and inflamed off and on for a period of weeks. They usually then resolve spontaneously, each one of the little areas of inflammation shrinking down and then becoming flat rather than raised and inflamed. They leave a bruised appearance. Then, they resolve spontaneously completely.

So, while I was just looking for a definition, I think that answers it for you. It is not permanent (probably only feels that way).

Positive energy and prayers winging your way, Jana.

I know the last thing you want is more surgery.

{{hugs}}

noreen

Still praying for your family.

any news on the baby?

Tara-

I understand where you are coming from - one approach you might try if you want to stay away from drugs is cranial sacral therapy. It won't hurt and might help. My PT is doing it on my neck as the docs fought in the hall last time I was in and are clueless how to proceed. I was able to pick up and read a newspaper in her waiting room last week - haven't been able to do that in a year without aggravating my constant migraine.

As long as no one is doing without I think this is worth a shot -

http://www.iahp.com/WestWindsCST/

I searched for a doctor in Seattle certified in the technique and got this woman. Her profile says she specializes in post surgical issues.

Melatonin can be a vasodilator and make orthostatic HYPOtension worse.

Melatonin helps me, but may not help others.

I tried it as a sleep aide a long time ago and slept around the clock and was still groggy the following day. Now I know it was the NCS.

Welcome Tara Lynn

I am glad that you found this wonderful group. The knowledge and support here is in a word, incredible. Your journey is like many here and I am sorry it took so long for your diagnosis. Having a bad time after surgery is another common event seen often in forum members.

The stomach problems probably shouldn't be treated with tylenol and advil - but you probably know that. Are you sure it helps or is the pain passing after you do something for it? Have you tried simethicone to eliminate a gas component to the pain? Is the pain in the area around your recent surgery - I'm thinking adhesions - or has your OB/GYN already cleared this? I know you don't advice on seeing a gastro guy and I've put off going back for over a year but there it is - it is your body and your decision. Does your PCP know you are taking the OTC for abdominal pain?

I just don't want you to end up sicker and have to see docs in an ED when you have lost control over who you see for your medical care.

We can all relate to your PTSDD - Post Traumatic Stress Disorder from Docs.

Hope today is a good day

noreen

{{Nina}}

you're showing your true mettle girl - you are remaining strong and true to yourself as shown by keeping your medical priorities straight (and, of course, thinking about your kitties). I think your moniker should be the Amazing Mighty Mouse. So many would fall apart and if they had a chronic illness complicated by dysautonomia would fall further downhill if situations were reversed.

I hope knowing that positive thoughts and loving energy is flowing toward you from this forum is a help. Remember to breathe, when in doubt, listen and -

On another note - I understand how hard it can be to find a neuro you can work with - I've got way too stories on that specialty. It is wonderful that you know exactly what you need from them and refuse to take less than you deserve.

Hope the headaches relent and the cats get all the petting they deserve (in their minds, of course)

{hugs}

noreen

It all sounds normal for this group.

Kudos for figuring out the BP thing on your own. Hopefully your cardio will order a tilt table test to complete your diagnostic work-up.

I, too, had a long period of recovery from surgery. Whether it is the hypermobility causing the dysautonomia and then any deconditioning making everything worse = it is all not fun.

Welcome to the group. At least you found a place where you;ll be understood.

Thank you so much for all your comments. I have tried a cooling vest (and like my collection of compression hose and abdominal binders), it has not offered the relief I hoped. Simmy, I have thought about the reclining wheelchair, so I can actually get away from the house. I'm not ready yet, but I may head in that direction. It kills me that I can jog, but I can't sit or stand. I haven't come to terms with this yet. I wasn't prepared for how far back the hot weather has set me. Can someone tell me if Portland, OR has a similar climate to Northern California?

cooler.

Portland, OR temp-

Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec Year

?C 4.1 6.0 8.3 11.0 14.1 16.9 19.7 19.6 16.9 12.6 8.0 5.2 11.9

?F 39.4 42.8 46.9 51.8 57.4 62.4 67.5 67.3 62.4 54.7 46.4 41.4 53.4

Source: PORTLAND data derived from GHCN 2 Beta. 1426 months between 1873 and 1991

If there were no financial considerations, I'd move to Hawaii.

DINET has a doc listed in Honolulu, the average temp ranges from 72 degrees to 80 over the course of a year and the humidity is a little over 60 %. If they would just do something about that sun that keeps shining, it'd be perfect.