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For those of you with disseminated VF

 
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jayhawklyn



Joined: 27 Sep 2012
Posts: 4
Location: Kansas City, KS

PostPosted: Fri Oct 05, 2012 3:27 pm    Post subject: For those of you with disseminated VF Reply with quote

My husband has been battling VF for nine years now. The pain most of the time is eleven out of ten. He is having difficulty sleeping for more than an hour or two (at most). Does anyone else experience this serious problem? He will drop off to sleep at the drop of a hat--when he is able to make it to work, he often takes a nap early afternoon just so he is rejuvenated enough for the 45 minute drive home.
Our primary dr. has been wonderful through this but the frustration for my husband keeps mounting. With the medicine he is prescribed, he should be able to sleep longer than an hour or hour and a half. We try taking walks and hope that it helps him sleep and as you all know, it's very difficult to exercise when you feel the way you do. If anyone else had this problem and was able to resolve it in any way shape or form, we would love to hear what has been successful; knowing everyone is different and certain things may work for some but not others. His headaches are increasing and lasting longer which frightens me. This is my first post but feel like I know some of you like family because I've read so many of your stories. God bless all of you and your families for having to somehow cope with this horrible, yet unpublicized disease. I get so angry at the lack of knowledge by the medical profession that without this site a person would think they were crazy. Thanks for any feedback.
Lyn H.
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susan ulmer



Joined: 04 Oct 2010
Posts: 418
Location: albuquerque nm

PostPosted: Fri Oct 05, 2012 4:17 pm    Post subject: Reply with quote

Hi Lyn...Welcome to our online community of orphans. I'm so sorry about your husband's problem and I'm so sorry about the number of times I have to say this. It never gets any easier to hear of new friends with problems that are so incredible in their diversity yet so similar in their ability to make our lives miserable.

I also drop easily into an hour or two of sleep before I wake up and attempt to start it all again. I wish I had a definitive solution for this but I don't. I can tell you what I do. I added up all the sleep I got and although it is segmented, it does usually total 7-8 hours so I quit letting it aggravate me and just decided that was how it was going to be and I needed to relax and live with it. This helped. I also try and remember what I'm dreaming when I wake up [I find that I dream almost the whole time] so that I can re-enter it when I attempt to go back to sleep. Like "Where was I?" I usually get up and wander around for a few minutes, take a Motrin, and lay back down as if it is for the first time. Then I use Sharon's relaxation technique...breathe in through your nose to the count of seven [or as far as you can count], hold your breath for a count of seven, and exhale through your mouth for the count of seven. If I can keep my mind from thinking about how annoying all this is and concentrate on relaxing, often I go back to sleep quickly, just to wake up and do it over but still... It has become my sleep pattern. I don't want to get strung out on sleeping meds and so far this gets me through the night.

I know you have hopes for a better answer than this and hopefully someone will have one but I wanted to welcome you and give you my two cents. I hope you husband finds the solution that gives him a good night's sleep, his headaches diminish, and his health improves. Please stay in touch and let us know how you [and he] are doing.
All the best,
Susan
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jayhawklyn



Joined: 27 Sep 2012
Posts: 4
Location: Kansas City, KS

PostPosted: Fri Oct 05, 2012 4:50 pm    Post subject: Thanks Reply with quote

Thank you Susan for the breathing technique. When Andy wakes up I will show him your reply. Unfortunately he suffers from nightmares and there are times he doesn't want to go back to sleep.
I want to be as much help to him as possible but he is under so much stress with his business, his mom with brain cancer and the fact that we are 24 hours away by car. In fact the last time he slept all night was in late January on our way back to Kansas - at a hotel in your hometown as that's a good 8 hour drive from Tucson. I offered to drive somewhere just to see if it would have the same effect -- if it worked it would be well worth it!
I thank you again for the welcome Susan--wish it was under different circumstances. Best to you-
Lyn
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kat



Joined: 30 Dec 2004
Posts: 912
Location: Creswell, Or

PostPosted: Fri Oct 05, 2012 6:12 pm    Post subject: Reply with quote

The nightmares can be caused by the medication. You mentioned his headaches getting worse. Has he had a lumbar puncture to rule out cocci meningitis? I don't mean to scare you but it's better to know ASAP if it has gone into that.
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God Bless you and keep you,
Kathy
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jayhawklyn



Joined: 27 Sep 2012
Posts: 4
Location: Kansas City, KS

PostPosted: Sat Oct 06, 2012 12:15 pm    Post subject: Spinal taps? Reply with quote

He had a spinal tap at the onset of the disease and we were told everything was okay. He has not had one since. Does anyone else experience the sharp, take your breath away type headaches like he is?
We are working on a much better diet approach, eliminating as much sugar as possible and he is taking a probiotic for the digestional issues he's experiencing. Just when he gets one issue somewhat under control, it seems to find somewhere else to hide out and attack.
He had another very long night with very little sleep due to his horrible stomach ache. He has introduced the chia seeds into his diet, the coconut water as well. I mentioned that we walked yesterday and as you all can relate too, he is certainly paying for it today.
He was the picture of health before VF, never having to go to the doctor for anything than routine stuff (because we are all "getting older" theory) and it's hard not to be angry when the love of your life is suffering.
How often should a person have a spinal tap if the headaches don't subside?
Sorry to ramble and thank goodness for an outlet--Sharon and David thank you so much for all your dedication.
Best to all-
Lyn
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kat



Joined: 30 Dec 2004
Posts: 912
Location: Creswell, Or

PostPosted: Sat Oct 06, 2012 1:02 pm    Post subject: Reply with quote

It's hard to say how often a spinal would be needed if his test were negative. But any change in severity of headaches or neck stiffness would be an good indicator for me. I know how you feel about watching your loved one suffer. I took care of my brother for 5 months before he died of cocci meningitis.
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God Bless you and keep you,
Kathy
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LindaA



Joined: 07 Jun 2012
Posts: 65
Location: Surprise, AZ

PostPosted: Mon Oct 15, 2012 12:17 am    Post subject: Reply with quote

Lyn, my sincere sympathies to you and your husband.

Yes, I'm a segmented sleeper. I go to bed at 10 and wake at 2 and can't go back to sleep. Then I'm exhausted and end up taking naps which are also short and segmented. In all, I'd say I get 6-8 hours total/day but the bed is like a war zone.

Here's something I recently tried. I downloaded some Itunes meditation type and nature sounds like soft rain, stream, ocean and put them on my ipod. Some of the rain ones are 20 minutes long. Anyway, I keep the volume pretty low and even if they don't put me to sleep (which is because I don't like things in my ear when I sleep on my side), they do unquestionably relax me to where I can disconnect the ipod and roll over and sleep. Another thing that could help is a light back massage.

Good luck.

Linda
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Chris Gaynor



Joined: 03 Oct 2011
Posts: 31
Location: Fountain Hills, Az.

PostPosted: Tue Nov 20, 2012 3:22 pm    Post subject: The disease nobody understands, even doctors Reply with quote

Lyn, You should call my wife; she has been dealing with me and my valley fever for 3 and a half years; I have had migraine headaches for that long; I have had a heart attach, an anuerisym, and a blood clot in my lung during that time. My valley fever went from my lungs to my spinal cord and I now have cocci meningitus;you have the greatest doctor there is right there in Tucson at the center for Valley Fever Excellence, Dr. John Galgiano; you must find a good infectious disease doctor if not Dr. Galgiano; for me it is pain management; I was having to take oxicodon until I went to a neurologist who gave me about 20 shots of Botox in my skull; I havn't had a headache for 10 days; I pray that this works. My wife's number is 602-561-1744; call any time, God bless you.
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KarenF



Joined: 13 Dec 2011
Posts: 9
Location: Long Beach, CA

PostPosted: Fri Nov 30, 2012 10:00 pm    Post subject: Headaches Reply with quote

I had rabid headaches until I was reduced on the diflucan to 400 mg. Then the leveled off a annoying and limiting but not debilitating. I don't know what medications your hubby is on but at high doses, the drugs of choice for "cure" can contribute to the overall "misery".... I'm sorry you are going through such a difficult time and pray you will find some answers to improve life...
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