New To This Site and Hoping For Help...

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Violet M
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Re: New To This Site and Hoping For Help...

Post by Violet M »

DES, it could be cymbalta is keeping the arousal under control. For me the antidepressants worked better for PGAD than pain.

Best,

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
DoubleEdgedSword
Posts: 201
Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: New To This Site and Hoping For Help...

Post by DoubleEdgedSword »

Hi Violet,

Yes, it could very well be the increased dosage of Cymbalta has quelled my arousal. It's just too darn bad it's so expensive. I hope it continues to work as long as I'm on it. I don't want to think about what I'd be like without it. :?
On the road of discovery to see what is causing my PGAD.
DoubleEdgedSword
Posts: 201
Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: New To This Site and Hoping For Help...

Post by DoubleEdgedSword »

Going to see Dr G in a few hours for my follow-up visit.. I'm going to find out when he estimates his botox study will happen. I'm having that annoying prickly pain and his topical cream is helping. The pain is pretty much daily now so maybe I need something else for it, even to break the pain cycle..

Hoping he has some answers for me.
On the road of discovery to see what is causing my PGAD.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
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Re: New To This Site and Hoping For Help...

Post by Violet M »

Hey, DES -- did you find out when the Botox study starts?

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
DoubleEdgedSword
Posts: 201
Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: New To This Site and Hoping For Help...

Post by DoubleEdgedSword »

Hi Violet,

I didn't find out when the study is.. I met a new resident & gave him my history, & any changes since my last visit.. He even asked if I had any questions or anything else to ask him, but I totally forgot about it! I swear these meds are eating away the few active brain cells I have left! :lol:

Doc G wants to see me again in early October, so unless he contacts me before then to let me know when the study is, I'm writing this in stone, so I can hit myself in the head with it so I don't forget again! Last I heard it was going to be the Fall or early winter..

At least I got a renewal on the helpful topical cream for my pain.. ;)
On the road of discovery to see what is causing my PGAD.
DoubleEdgedSword
Posts: 201
Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: New To This Site and Hoping For Help...

Post by DoubleEdgedSword »

I haven't been here for a long time. Lots of things have changed. My PGAD isn't as bad now, but it's still there. No word on when the botox study will happen, but last time I saw Dr G, he said it wouldn't be for awhile.. I'm still getting some pain above my clitoris & on my labia, but it usually resolves well with the topical cream.

My main problem now is a persistent headache. I've had it 24/7 since the last week in June. I'm almost at the end of my rope with it. I've tried extra-strength Tylenol, Migraine & Tension Headache Tylenol, Topiramax (which gave me tingling in my hands, feet & the right side of my face, so I stopped it) & now I'm on Inderal. I was at 20mg twice/day, & now I'm up to 40mg twice/day. Nothing has helped at all. In fact, since increasing my dosage of Inderal two days ago, my headache's gotten worse.

I had the greater & lesser occipital nerves blocked in November. It helped only until the anaesthetic disappeared, (about 4-6 hours) then it was back. I had a CT scan a week & a half ago, but no results yet. I've decreased my Cymbalta, down to 60mg from 90mg. I know it's causing me to clench my jaws, which could be contributing to the headache.

Three days shy of a year as a diabetic, I was able to decrease my Metformin from 500mg twice/day to 250mg twice/day. At least something's going well for me regarding my meds. I'm so fed up & tired of this blasted headache. My family doc, Dr G & the headache docs I've seen don't have any answers yet. Perhaps the CT scan will tell them what they want to know & we can tackle it a different way.. Otherwise it'll probably be an MRI next..

Sorry for venting. I guess not many come here with happy news, & I wish I had some to share. :(
On the road of discovery to see what is causing my PGAD.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: New To This Site and Hoping For Help...

Post by Violet M »

Hi DES,

Sometimes Botox helps migraines. Is that something your docs have considered?

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
DoubleEdgedSword
Posts: 201
Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: New To This Site and Hoping For Help...

Post by DoubleEdgedSword »

They have mentioned it in passing, along with accupuncture, massage and a few other things.. I did go for a massage back in August, I believe, and had them work on the head and neck (along with my back and shoulders), but massage actually made it worse..

I suppose it depends on what they find as to the best route to go. I know that worrying about it doesn't help, or thinking of 'what may be', but it's hard not to consider all the possibilities, including the horrible ones. I'm just so fed up that none of the meds I've tried have helped at all, and have in fact made it worse..

I'm going to call today or tomorrow to see if any definitive results have come in.
On the road of discovery to see what is causing my PGAD.
DoubleEdgedSword
Posts: 201
Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: New To This Site and Hoping For Help...

Post by DoubleEdgedSword »

It's been awhile since I've been here. I've got lots of health issues right now to deal with.. My PGAD is very much diminished. I get flare-ups when I get really stressed. An endless stream of appointments this month in particular has spiked it, & when I don't have PGAD I have some degree of pain. Most of the time the topical cream helps, but sometimes I resort to ice.

My headache has been non-stop since last June. I'm on my 5th medication for it, & nothing has really helped. I'm on 40 mg of Nortriptyline right now. If anything, it's shaved a thin layer off of it, but it's still there, day in & day out. I've gone off of Cymbalta to start the Nortriptyline. I feel the cymbalta helped my depression more, but it was cost-prohibitive to me. I'm sure it also contributed to my jaw-clenching, which aggravated the headache more..

A CT scan revealed no direct cause for my headaches. I've got some sort of bony abnormality at C5-C6, but that really doesn't mean anything to me, & the anaesthesiologist said it wouldn't be contributing to my facial & sinus pain. I'm scheduled for an MRI in a couple of weeks. If no reason for headaches can be found, he will pass me back to Dr G..

I just had an endometrial biopsy done. My periods have been very heavy & very long for about 5 years now. I know I have fibroids, menorrhagia, pain, nabothian cysts & adenomyosis, & an ultrasound later this month may tell my gyno what's going on & if I'm a good candidate for a hormonal IUD.. I guess I'm not as close to menopause as many women my age are..

I had a massage last week that seemed to help with my sinus pain. The masseuse worked my neck, back & shoulders, then very gently worked on my scalp & sinuses.. It seemed to ease the pressure in my sinuses for sure, & if nothing else, it didn't make my headache any worse.

As far as my PGAD goes, it disappeared on it's own the first two times I had it. With any luck it'll do the same this time. I know it's overstayed it's welcome by far, but the fact that it's been at a manageable level for several months leads me to believe that it can happen again. I'd be really happy if it took away my PN pain when it left. Although I do get depressed a bit more now than when I was on Cymbalta, I have to believe that I can get better, that I will get better..
On the road of discovery to see what is causing my PGAD.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
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Re: New To This Site and Hoping For Help...

Post by Violet M »

Hi DES,

Sorry to hear you are having a flare-up right now. I want to respond about the headaches.

I had a sinus headache frequently for about 20 years until my acupuncture gal (who I went to for PN) suggested that I try ayvedic treatment for the headaches. I was extremely skeptical but willing to try just about anything at that point since my CT scan didn't show much. After several months the ayuvedic treatments pretty much took away the headaches. When I tried quit the treatments the headaches came back so now I just do the treatment every morning.

Here's what you do:

Take 1 Tbps of organic cold-pressed sunflower oil first thing in the morning when you wake up but don't swallow it for 20-30 min. While it's in your mouth make chewing motions with your mouth. I know this sounds difficult but after you've done it a few times it's really easy. The only thing is you can't talk while you are doing it. After 20-30 min. you spit it out in the sink and brush your teeth. Wash your toothbrush with soap. Store the sunflower oil in a tightly closed container in the refrigerator.

It may take several months of doing this daily before you notice any difference. After several months I decreased the time to 15-20 min. The theory behind how it works it that the oil draws fungal spores and over time the fungal spores in your body and sinuses decrease. So, it's important not to swallow the oil and you should wash your toothbrush. Sounds crazy, right? I thought so too but I rarely get a headache anymore and when I do it's mild. I used to live with an almost constant headache. Anyway, if you try it, I hope it works for you. I told another friend about it and she was able to avoid having sinus surgery because it worked for her.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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