torn2bits Posted February 6, 2014 Share Posted February 6, 2014 Hello EVERYONE.... I have been stuck in limbo many years now. With one constant non changable fact Extreme Headpain. I never had headaches before 4+ years ago and ever since nonstop. I've never experienced anything like this, (4+years,aside). My head pressure is from the right rear of my skull & right cheek area/eye socket. I've had 2 seperate surgeries for Cervical spine stenosis and now my Cervical is fixed from C2-C7....no relief. Before these fusions My MRI showed Chiari 1 malformation ...... cervical fusion done for preventing faster decline in Quality of life. I'm having to take opiates, none of the sumotriptans or trip tan meds worked at all none. I searched 4 years now nonstop and need relief bad,real bad. Do these HEADACHE symptoms sound even close to Any of you guys/gals? Any? Thanks for any and all help, thanks so much.....torn Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted February 6, 2014 Share Posted February 6, 2014 T2B, Please review the main documents on the ClusterBusters website for a complete description of ClusterHeadaches. In short: CH is normally characterized by intense pain on one side of the head around the temple and eye socket. Attacks usually come for 15 to 90 minutes 2 to 8 times a day. Most people are episodic meaning they get the attacks for 1 to 3 months out of the year. Some people are chronic meaning the attacks can come and go without an annual break that episodic get. That said, there are some cases that are outside of the above description. Many people have varying cycles, degree of pain, location duration etc. CH is commonly referred to as the most intense pain humans endure. Please post questions everyone here is VERY helpful and caring. J Quote Link to comment Share on other sites More sharing options...
trytosurvive Posted February 6, 2014 Share Posted February 6, 2014 Sorry Torn2, I will give you some of the more common symptoms but these are not all inclusive. Symptoms of cluster headaches often include stabbing pain in one eye (behind), runny nose, watery eye, and a drooping eyelid on the affected side of the head. Does this happen as well? The triptans you speak of, is it pill form or injection? Usually 6mg injections will abort the attack for most CH folks. Also if the pain is constant around the clock it doesn't fit the mold of CH. Everyone is different of course. Quote Link to comment Share on other sites More sharing options...
torn2bits Posted February 6, 2014 Author Share Posted February 6, 2014 Thanks to both of you guys & gals ..... Truly terrible agony,I can't imagine worse than this. I have no means of medical insurance... in the US, you will not get the CARE you deserve as a human without money . I was diagnosed with occipital neuralgia & chiari 1 malformations with degenerative disc disease. I am searching for relief, I don't drink alcohol, & am afraid to use marijuana as my Docter may discontinue seeing me,I see him monthly he prescribes pain meds. The pain meds don't work and are physically addictive... I truly need relief, I can't walk,stand...etc without moving like a 90 year old because my feet impacting the floor alone INTENCIFY this head pain. Been searching for help for years with none that truly helped. A year ago I smoked marijuana this was WAY more relief than I've ever gotten from Opiates. Any help at all is a Godsend. Thanks again Torn. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted February 7, 2014 Share Posted February 7, 2014 Jeez that sounds horrible Tom, sorry to hear of your predicament. In my recent bit of searching online I have seen some claims that CBD rich marijuana, or concentrated CBD hemp oil, can give people with severe nerve pain relief when opiates don't, so I'm not surprised to hear of your results with it. My head pressure is from the right rear of my skull & right cheek area/eye socket... ....none of the sumotriptans or trip tan meds worked at all none.... ..Do these HEADACHE symptoms sound even close to Any of you guys/gals? Any? The eye socket part yes, but otherwise no (the trigeminal pain can radiate into the cheek area for some CH'ers, but not rear of skull). I wish I knew whether the busting, O2, etc. we CH'ers do could help with your condition - has it been diagnosed by a genuine headache specialist? We find that ordinary neurologists and other doctors, unless they've done lots of headache disorder independent study (which would be unusual), are typically dangerous for us to consult with, as they don't have adequate training/knowledge at all. [Edit: I wish you lived in Colorado - check out this bit from http://cbdfreeforall.org/about/free-for-all: "CBD Free For All is a project that has risen out of the passage of Ammendment 64. Adults in Colorado are now allowed to cultivate up to 6 cannabis plants (3 flowering). With the passing of the new law, this project's goal is to distrubute FREE high-CBD cannabis clones/cuttings to any adult in Colorado who wishes to grow it for their own health."] Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted February 7, 2014 Share Posted February 7, 2014 Hi t2b, Really feel for your pain. It sounds horrific. But I don't think it is sounding like Cluster Headaches. Movement doesn't normally cause more pain during a cluster attack. In fact, most of us can't sit still while suffering, and must walk around, bang our head on the wall, anything but be still. It does sound like nerve generated pain of one sort or another. I have a friend who has a degenerative condition in her spine that only gets worse over time. The docs all give her strong pain killers that just make her zone out for days, but she much prefers a joint once or twice a day. It is SO much more effective than the pain killers. If that works for you, get some, is my advice. I've learned from having cluster headaches that doctors don't know everything, and sometimes we have to find our own solution. That may include finding a doctor who is more open minded too. Good luck. MG Quote Link to comment Share on other sites More sharing options...
torn2bits Posted February 7, 2014 Author Share Posted February 7, 2014 I'm very Thankful for the kind thoughts ... I can't bring myself above a whisper my own speaking makes my head Hurd worse the vibration of your own voice does it,coughing,hiccups will make you wish. "Bad things". I'm a 40 old man, can't push to increase Irvine flow without getting increased headpain. Sorry and thanks again. Smoking marijuana (like a small joint) Gives me more relief than Morphine. Freak ing laws are a bitch doctors here do urine samples MMJ will then be your only way then doctors testing you all will assume "dope-fiend " upon seeing you... .....Torn Terribly I could take up drinking& Docters could ask me to stop. Quote Link to comment Share on other sites More sharing options...
Potter Posted February 7, 2014 Share Posted February 7, 2014 What are you currently using to control the pain. Narcotics are counter productive for clusters not to mention the havoc they create on the rest of your body. Potter Quote Link to comment Share on other sites More sharing options...
torn2bits Posted February 7, 2014 Author Share Posted February 7, 2014 Hiya Potter .. Norco & morphine&neurotin And your right I hate these opiates, Honestly I feel the norco helps some the morphine is higher dosage & I am afraid my head will full on leave my body if I tried to just stop EITHER. CHIARI is a life stealer. Headpain, Keeps me laying down most of the time. I've fought just to ride in a vehicle then pay for it dearly for a damn week. I can't work and I loved my job :-/ , Marijuana would I believe give me better life heck I know it would & I would gladly trade the majority of the opiates up for it BUT ending up in jail like this would be a death sentence. I've seen my doctor monthly for 15 years (bipolar).. He asked me if I did street drugs & I did a UA and told him I smoked weed and had constantly since 13 he asked why i told him it relaxes me and helps me sleep. Doctor, saw marijuana on my UA and prescribed serequel. Me and the Docter never talked of weed since... Just scared to not be treated & I've seen him so long he's a wise dude probably assumes I smoke weed anyhow,except I couldn't afford marijuana now anyhow. Sorry to go on & I'll never stop searching for relief. Thanks again all...torn Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted February 7, 2014 Share Posted February 7, 2014 The MJ just so clearly sounds like the obvious least of all evils for pain relief for you, so how could anyone not agree that pure insanity reigns when you are deprived of it while being prescribed opiates instead (??!!). I suppose moving to Colorado is not an option for you, so I guess I'll just hope you're in a state that will follow suit - or at least legalize medical marijuana - sooner than later. Meanwhile maybe something like the legal in all 50 states high CBD hemp oil might've been helpful, and likely wouldn't cause the flunking of a urine test, but I guess since it takes so much hemp oil to produce the high CBD extract, the stuff I've seen so far is crazy expensive, so um yeah, probably forget that too. This is when I can entirely relate to Dumpstaphunk's song Livin' in a World Gone Mad. :'( Quote Link to comment Share on other sites More sharing options...
torn2bits Posted February 8, 2014 Author Share Posted February 8, 2014 Thanks again All you guys . Indeed insane world. I wish that Docters had "off record " discussions.. I'd use mmj and change my life, I had smoked for 1 month 1-2 times daily & I could feel a total difference. I just can't loose my doctor of 15 years. Thanks again everyone...torn Quote Link to comment Share on other sites More sharing options...
torn2bits Posted March 9, 2014 Author Share Posted March 9, 2014 Hiya Fellow Sufferer's, Please let me say thanks to you all, I still search& search & search for: Relief..... I just wanted to thank you all for suggestions & ideas. Your honesty and genuine intent to help me is and was a blessing. I check back often and have sent a few to this site that they may end their suffering aswell. Just a thank you & best wishes..... torn Quote Link to comment Share on other sites More sharing options...
DrTy2 Posted March 9, 2014 Share Posted March 9, 2014 Hi, I'm a doctor, and I'm sorry to tell you that Arnold-Chiari malformation is herniated cerebellum, and so it's quite unrelated to Cluster headaches. Your pain is due to mechanical compression of confining nervous system regions, and it's not caused by a metabolic disorder such as in Clusters. The reasons why opiates are not working is probably due to the fact that they increase endocranial pressure, thus they're probably aggravating your condition. There's a distinct counterindication on using opiates on pathologies like yours, so I can't tell if there are some unknown clinical reasons behind this prescription, or if just your doctor doesn't know enough about your specific malformation. Also he prescribed you Quetiapine (Seroquel) for maniac disorders, wich is completely unrelated to pain, but rather to psychiatric conditions, so my best guess is that you need to see aneurologist rather than a psychiatrist for your problems My advice is to suggest him about taking osmotic diuretics to reduce your cranial internal pressure, and/or an additional forced ventilation regimen with different oxygen pressures, until you find the one that best suits you. That's the best I can do, if you send me your case history I may try to give some more helpful hints, but sadly, that's not my field of specialization I do really wish you best luck man! Quote Link to comment Share on other sites More sharing options...
w7sg Posted March 18, 2014 Share Posted March 18, 2014 Hi Torn, I didn't see you refer to trying Vitamin D3. I had very similar constant pain, it varied between localized like yours to all over the head. I picked up 1000iu Vitamin D3 @ Wal-Mart, started taking 3000 a day. 1 in the morning, 1 @ lunch & 1 at dinner. Fantastic results. Cut the pain to almost gone. Quote Link to comment Share on other sites More sharing options...
torn2bits Posted April 2, 2014 Author Share Posted April 2, 2014 Hiya w7sg, Sorry for the late reply, I take 10,000 IUD 2 days a week,this helps some ,however it doesn't change my constant HEADPAIN... Thanks a million for a great idea, I also take omega 3 daily. There is nothing I wouldn't do to get some type of relief.. In my dreams I had hoped that I would be able to get a full day or maybe 2 days relief from mushrooms. I've contemplated the mushroom use on a 1 off use standpoint just in hopes of lifting my spirit & mind. Constant headpain is unreal . Thanks for any and all help.... Torn Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 2, 2014 Share Posted April 2, 2014 t2b, I hope you are following up on DrTy's recommendations, including his offer to look at your case history. If you don't actually have CH, there's not much point in pursuing CH remedies, though I hear you saying you're willing to try almost anything that might help. However, if you want to keep trying the D3 in a way that is consistent with treating CH, you should look at this file: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804. You will quickly see that you are not taking nearly as much D3 as the protocol recommends (neither is w7, but it seems to be working for him/her), and it appears that you probably are also not taking enough of the other recommended elements. Again -- this might not help your head pain, but since you say it seems to be helping a little, maybe doing it "right" (from a CH perspective) might help a little more. It would be good if you could get a blood test to determine what your current D level is. Wishing you the best -- and again urging you to follow up on what DrTy recommended. Quote Link to comment Share on other sites More sharing options...
torn2bits Posted April 3, 2014 Author Share Posted April 3, 2014 Chdad, Thanks for the d3 link.... My d3 was low and my Doctor had told me to take 10,000 IU D3 on Sun & Wed . Upon reading the link you gave me (thanks) I will be Upping my D3 accordingly. Thanks again.....torn Quote Link to comment Share on other sites More sharing options...
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