How can I go on? Today is just indescribable… Saw my doctor, who told me to take more pills… Think she’s forgotten how many I take already???
I’m so sick of even more pills, that only make my head more fuzzy, make me unsteady on my feet, make my mind totally confused, and she tells me to take MORE.
I realised today that, that’s it from now on, you just take more and more pills…
There’s no operation that will help ( I’ve had my MVD) it didn’t work, there’s no medication that keeps the terrible searing pains away, not for long anyway…where do I go from here?
I’m so tired, I don’t want to do tomorrow, I sit here with tears running down my face, because of the pain, I know many of you are doing the same tonight, and I know you understand, I’ll be better tomorrow? Just wanted/needed to tell someone.
Night night all x
I understand. I don’t know the answer. All I can say is hang in there. Hugs!
Anne, I understand as well. You’re not alone.
I am so sorry. If you think you're not able to take more pills, maybe you can ask for better choices. Or ask for more/different doctors. Ask for more surgical options (I just found out about two more today I had never heard of before; I thought my doctor had told me about all of them!).
Don't give up. This sucks, so much. Being strong is so exhausting and you shouldn't have to do it all the damn time.
Yep…try new doctor
And here look up topicals. ,!
I am not a canidate either. I understand how you feel. It is overwhelming, terrifying and makes you feel hopeless. I have been battling the hopeless feeling today.
I must write to you all, (too many for individual replies) to say thank you for your support and ideas… We get so desperate sometimes, and life feels so hard, I’m sure it shouldn’t be this hard? but we are a tough lot that’s for sure, this desease is not for the faint hearted…
Thank God for you all, sending you all love Anne x
Hi Anne,
Brings tears to my eyes when I read your post. My Neuro and Doctor have always been pill pushers and to be honest that is what they have been taught. They dont believe in herbal natural remedies and from all the pills we take its slowly killing us and destroying our internal organs. I was diagnosed 2 weeks ago but have suffered this horrible condition for the past 2 years and experience complex migraines, TMJ and severe ear infections to my right side and only to my V3 branch. I refused their seizure medication because I couldn't justify the side effects and I would be unable to become pregnant while on it because I have high chance of loosing my baby. Ah if its going to kill a baby then what is it doing to my body??
I am seeing a Osteopath tomorrow who specializes in TN and I am taking powerpatches that have phytoplankton, red ginsing and irons silver which stimulates blood flow and creates a healing environment. I sleep well and helps me with my migraines and my sharp burning pain but once again everyone is different. I have more information only if you are interested but it helps me.
We are all here for you and we are so lucky to have a forum like this because we can all be there for each other and share our story. I also find it hard when talking to friends and family about this condition because they dont fully understand which is very frustrating, almost like you are creating this illness in our minds.
Anyways I hope you find something that helps you.
Hi DiLeMmA1981, great to hear from you, I would be very interested in any information you could give me on any alternative medicines you have tried…
I haven’t seen an Osteopath? I went straight for the MVD as I was told that was the best option, but like I said unfortunately it didn’t work, my neurosurgeon hasn’t given me any other options, so now I see a neurologist, who messes with my meds…
You were mentioning that lots of people don’t know what TN is, my husband took me to the hospital emergency department once, when I was particularly bad, and even the triage nurse didn’t know what TN was… Which is as you say very frustrating…
I’m so much better this week, last week was terrible, we all have weeks like that? The searing pains are so tiring, and I felt like they were never going to end, they always do eventually…
Well, thanks again, hope to hear from you soon,
This site is wonderful, full of support and love and very useful information.
Hope your having good days,
Many hugs Anne x
Hi Anne,
My pleasure and if something helps me then maybe there is a chance it will help others. As I said i don’t take their meds but everyone is different but I have been dealing without their pills for the past 2 years. I also see my ENT every 2 weeks to get my ear cleaned be used the TN triggers a lot of irritation, inflammation & burning in my right ear cannel and the only thing stopping middle ear infections is the regular cleans.
Yes I was in and out of hospital and baffled the doctors they hadn’t seen anything like it because it also threw my jaw out and now have permanent damage to my right TMJ joint sucky clicks and I have restriction with opening it. I even had my wisdom taken out. They had no idea and so many people are overlooked and suffer for too long. I really hope they find a cure soon because I refuse to have the op and I’m so sorry to hear you have had to go through it twice.
I’ve provided the links for Fg Xpress which has the powerstrips & testimonials so you can see the results people have experienced.
The ingredients Germanium-based far-infrared brings the heat to the pain area,
Korean red ginseng (known to improve cognitive function, manage pain and stress, improve the immune system), Marine phytoplankton & Silver (packed with anti-microbial agents that fight infections)
empro1.fgxpress.com
testimonials - http://www.checkoutthestrips.com/UPDATED-TEAM-%20testimonials%20update%20November%206%20docx.pdf
I understand doctors keep shovelling pills down our throats but there are other alternatives out there and if you can make an appointment with an Osteopath and tell them you have TN so they can better assist your needs. My neuro didn’t discuss this option only meds and operation as last result. There is more natural ways to help us then poisoning our body’s and it’s hard to accept because we are conditioned by the doctors who preach this only kind of medicine.
I am still coming to terms with this condition as I never thought it effected so many young people as well and believe doctors also overlook this. I was determined to find the root cause and I am slowly educating the doctors that it can effect anyone at any age.
When something takes away your quality of life you will do anything to get it back and we have to have faith that there will be a cure soon.
Yes had a good day but wish I didn’t have to go to work tomorrow because I surrounded by aircon which triggers my migraines and burning of the ear cannel.
Hope you also had a nice weekend.
Take care xxoo
How did you learn of these powerstrips? Was it something you found before your diagnosis?
Hi Lisa,
My mum is big on healthy products and asked me to try them because saw great results from them. And yes I found out about them before my diagnosis. My mums friend takes them who is a breast cancer surviver and has restless legs and arthritis in her knee and was walking without her walking stick and has no pain.
Obviously Chronic pain sufferers can take some weeks to really feel and see the results but they usually say you start to feel something in the 8-10 day mark and I know for one thing I get a good nights sleep and my pain isn’t to the extent it used to be. I haven’t taken endone or Tramadol for weeks. I would only take it if my pain was unbearable but so far so good. Plus I am trying for a baby so I can’t go on the meds and would take anything natural to help me and because there is no cure at this stage I don’t trust the meds or operations because it’s so risky and read so many horrible stories, that’s why I responded to Anne cause I felt she had tried everything and wasn’t getting any result and
The strips also state they reduce inflammation, improve libido, skin tone, reduce stress and tension, improve sleep, boost immune, energy, muscle strength, detox & cravings.
I also take the solarstrips which are made of phytoplankton which are like a breath freshener strip that dissolves on your tongue and has 27 vitamins and minerals and Amega 3. The guy who created it had cancer which went benign because apparently cancer can’t survive in oxygen.
I don’t have a lot of choice out there but I am willing to try anything and as will be seeing an Osteopath tomorrow night and can tell you guys how I go if you like.
Thanks xxoo
More and more! eventually some balance occurs! I hate taking a pill canister everywhere knowing if I end up somewhere where I run out of pills, I will literally convulse in a matter of hours. But some pain does subside somewhat, and right now its really cold everywhere I think that has something to do with it. It will get better, thanks for sharing, I have felt this so many times
Hi guys thought I would let you know how my Osteopath appointment went and omg the muscles are so tight at the back of my scull down my neck into my ear and jaw and will be sore for a few days. I have head exercises to do and I was requested to get a dye test done to my blood vessels using a CT Scan to determine if my artery is abnormal or really tell me what’s wrong or so I’m hoping.
There are 2 types of osteopaths one is just a standard one which I saw and the other is a cranial one but I didn’t realise all my muscles we so compacted and tight.
Oh and he said not to sleep on your tummy as you stretch the neck muscles too far and you should have a supportive pillow.
Hope this is helpful.
Take care