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Everything posted by spiny

  1. That sucks about the mattress. I'm hoping that with your 'Abby Doo comes first' that she recovers quicker than anticipated too!! Hmmm, another 6-7 weeks. Order one of those beds in a box delivered. The kind you can 'use for a year and return if you don't love it'!!
  2. Yep and I was too! Currently, not so much Shaun. I could stop taking one pill and drop 20 pounds in a few weeks. But it is the one keeping me going, so I'll deal with the chub for now. LOL!
  3. Boy, a 3' dog can take up 6' feet without even stretching!! And they do claim the whole bed too by going sideways! Hubby's dog used to holler to go out in the snow to pee at night. He would get up, open the door, walk across the porch to open that door and find the dog gone! Back in his bed, in the middle and growling when he tried to get back in it himself!! At was a game to the dog. It was worse if he actually went out, because he did the same thing, but with snowy feet and tummy. Nice cold wet bed then! Buy an air mattress maybe? Those rocks are miserable!! How long will this need to continue?
  4. The lift-assist harness is awesome!! Twenty years ago, we used a log carrier under a pup to help my neighbor with their dog post hip surgery. That lovely corset would have been a huge help! She looks pretty bright eyed and bushy tailed Bosco! That is wonderful. May this operation bring Abby many years of pain free running for joy! Did she hog the bed all night? It looks like she intends to keep it to herself here!!!
  5. Kat, my Neuro prescribed it for me about a decade ago. He handed me the script with 'Ask on your site how this works.' My reply was 'I'm 15 pounds underweight. Where is your trash can?'
  6. This is sickening. Topamax is awful and not a frontline treatment to start with. He has tried 'everything' with you and appears to be just going down his list of 'headache meds' to hand to you. That is awful and no way to treat a human being. I too would ditch it. Likely do a taper for safety sake, but I am not sure that is required with Dopamax. I'm guessing that yours are one sided based on the surgery, the diagnosis and the neuro. Is that true? Right there with you on the sinus surgery. We are female, so it is migraine or imaginary to many Neuros, so next up is often sinus issues! And no, the surgery did nothing here either. Nor has it helped countless others. Just like having teeth extracted has not helped. CHF is right on the O2 for CH. If it is Hemicrania, then Indomethacin is the drug of choice. And Jeebs is correct in that you need a headache specialist neuro, not a regular one. Hemicrania can be ruled out by a test drive in the Indo. If that is not it, then you need proper, best results medication and O2 for killing a hit. Are these headaches constant at the same level of pain or does it rise and then recede repeatedly? At times and over the long haul, it can seem like one headache all day when actually it is many of them. That stuff matters in a diagnosis. Have you had an MRI to check for abnormalities in your noggin? That should be at the top of the list!! For CH, it comes back all clear. Question: Are you taking HRT? Has it been adjusted based on your personal needs based on blood work? A sudden drop in hormones can create big problems for us and some of those are expressed in headaches. Some OBGYN's went nuts several years ago and refused to treat patients with HRT since it did not improve bone density. What they did not know and what was NOT reported is that most of the 'placebo' patients dropped out since they were so miserable, so all results were invalid! The yanking of HRT for any woman into menopause was horrid.
  7. I suggest some caffeine or ginger for those shadows. Either can rid you of the annoyance of having one. Some use Excedrin Migraine as it has caffeine in it. I had a long reprieve too - ten years. Since their return, my cycles have been 6 months long. Unless someone dosed me with epinephrine and that prolonged two cycles - adding an extra two months to each. The beer test? I wait for two weeks pain free to go there, but that is me. Others will try it sooner with different degrees of success. ATB!!!
  8. Keep us posted Bosco!! Thinking of you two today.
  9. Nope. I have not thought that you silly man! I am old and do not waste my brain thinking about such stuff Shaun. I have enough to think about: Remember my pills, remember to eat, remember to feed the critters, remember to answer you, remember to devil Jeebs, remember to go to the loo, remember to finish my coffee.............................. Leave age out of it and get new glasses. LOL.
  10. Hi and welcome Dmiller! I would suggest that she may need to see a doctor who is more current on medications for CH today. If Boston is within reach, there is a doctor there, Dr. Brian McGenney who is great! He is a member of our group too. He is not here much, but I would suggest a call to him if that is possible with insurance and all. But he is great for CHers who can see him. I agree with the previous statements - Lithium is seldom prescribed at all now for CH. Much less an infusion of it. ATB!! And thanks for looking out for her and joining the group! We love our supporters!!
  11. Alicia, your experience was wretched. I would love to stick all these 'know it all docs' in a room and give them ONE cluster with only each other to look to for help. No meds, no phones, no O2, just each other. Then they can 'judge' the situation. You know, lie down, turn off the lights, etc. Preferably a dozen in a ten foot square room! Glare.......... Yes, it sounds like CH. Yes, they will try the migraine box no matter what if they were educated years ago, are arrogant, or are too big for their britches. My current Neuro did the same thing. I was livid. I had a return appointment and that is the first time that I made my husband go with me for a doctor visit. He made one statement: 'I want my wife back. She leaves at 8pm every night and enters hell with the pain.' The doctor smartly changed his 'diagnosis' right then. All because the MAN said X. Which is infuriating, but did get me what I needed. Not sure of your marital state, but if you are married, perhaps drag him with you for support? Should not be needed, but it can be. The funny thing was that I was referred to him by my NP for Clusters when I had to take too much carbamazepine, was seeing in triplicate and still getting hit. So, my doctor believed me, but the Neuro did not. The suggestion that you drive with a Migraine is nuts! People don't drive with them either! It sounds like she is more interested in seeing you without any relief and in a wreck to boot than out of pain. In addition, O2 does not help migraine. How did she explain that bit? The D3 Regimen is awesome!! It will slow the ramp-up, lower the max intensity, and for many it can prevent a cycle completely. Just get your blood work done on a regular basis and have your D3, Calcium, and PTH checked. If they are good, even if the D is 'high', you will be good to go. The other two items must stay in spec. I would not be surprised if the combo of the Pred Taper and the D3 did end your cycle!!! It has done that for a lot of people - the D3. Neurology Today has even done an article on the lack of D3 in their patients and the issues it causes. I have hardly had a cycle in years thanks to taking those vitamins. There are others who have written on this thread who are pain free due to it as well. Anyway, if she did read to keep up on Clusters, she would know this and she would know that the ratio has finally changed after decades of it being stated that Clusters are 8-9 men to 1-2 women. This is proving out to be false after finally being looked at. Currently ratio is about 6:4 and some are already saying 5:5! So, no, it is not attached to that chromosome at all. I went undiagnosed for over 30 years. I was given two meds in the beginning when this started in my early 20's, but after that, I was on my own. I got migraine 'shots' when it was to the point that I had to have a break from pain. But back then I was Chronic and low level. That mess would do nothing for me today. You did not ask, but for those shadows you can: Eat ginger or make ginger tea, drink some caffeine, try Excedrin for Migraine as it contains caffeine. I'm sure that others have suggestions to add to this short remedy list. Those are the methods that I currently use and remember. Getting old sucks! LOL.
  12. I bet that you figure that out!
  13. Interesting Miilos. Of course many of us use coffee or an Energy Drink for a Cluster, so I do get the point that sometimes too much coffee is required. It just leaves one feeling jittery and 'not right'. How many times a day are you needing caffeine? Can you tell us where you are located? Are you getting the pain only on one side or are you getting both? Did the tests include a MRI? How did your doctor come to the diagnosis of Vasodilation Headache? I normally see that with reference to a particular medication, not a stand alone disease. Not that it isn't there! It very well could be and I just have not heard of it. Here are some medications associated with Vascular Dilation Headaches: Many drugs can cause vascular headaches by inducing vasodilation. These include antihistamines, sympathomimetic agents, amyl nitrate, nitroglycerin, nicotinic acid, hydralazine, prazosin, pentoxifylline, cyclandelate, nifedipine, perhexiline, theophylline, aminophylline, terbutaline, and dipyridamole. This is the D3 Regimen. The original and it contains fewer vitamins to take, as it is not so focused on anti-inflammatory and histamine. https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 It has helped many a cluster-head get out of pain and stay there for extended times. There is a more extensive one as well if this does not work. Are you taking any other medication that would affect your head? Like for heart issues or similar?? Next question: If you are only getting them a 'few times' a month, then why the concern over the caffeine? Does each headache require several cups of coffee to keep it at bay?
  14. With your plans as stated Kat, I don't see you needing the O2. If you do, head to the fire station perhaps? They are often more helpful than the ER. Considering where you are going, it may just be hard to put your hands on period! With that being said, your plan sounds solid. Perhaps pack some extra SPUT's just in case? I would get that Pred script filled here of course and keep it on hand. But I am prone to doing that just on general principles for emergencies. It pays to already have it before you need it! In the last 20 years, I have kept a taper pack on hand at all times for emergencies. It has saved my bacon more than once too. So, if there is a refill on that script, get it while it is still in date. Your doctor is pretty smart to give you the Valium. I am surprised that he gave you Xanax too, but hey, stash away what you don't use of either in a sealed bag and keep it for another time. Valium has a longer half-life, so it is better in that it lasts longer. Fill your scripts, do your busts, and have a ball!!! Fingers crossed that you come away from this trip with a huge smile and a newly found freedom.
  15. May you have a wonderful day too fulltime! My concern is that you do not have O2, which is the number one abortive out there! That is important enough that it should never be omitted! I am glad that you have found the methods that suit you to control your CH. I do wish that you had a decent, reliable way to abort your hits though. It is confusing that you say 'Clusters have no triggers', then state triggers that you personally have. You saying that these are only triggers when you are in cycle? That makes sense. But there are some things that will trigger a hit even out of cycle, so please consider those too. They can be devastating.
  16. Kat, with a script, you can call the O2 company that supplies you and set up to have O2 at your destination. They may have to refer you to the 'right' company for your destination. But, with a script, it is possible to have that base covered.
  17. Thanks for the cheerful story Jon!! When I think of lab animals, I always remember Robin Williams as the lab bat in a kid movie, with antennas attached to his head. He flies through the air, hits a tree, falls, and announces 'Gravity works!!!'. The director of the movie put Robin in a phone booth style enclosure, told him to start talking and recorded everything he said. Robin was one gifted individual
  18. Right you are my friend! Not a word about it either.
  19. Put here so it would get read. Interesting that only 'some' feel that minus the trip, it will not have the same effect. Ever tried the Pharma marijuana? No munchies! No nothing. Glad that a few see that. Also tells us 'why' they are doing the 'making'!! Drug Companies Join Medical Psychedelic Movement—but Without the High LSD and psilocybin in ‘magic mushrooms’ are among drugs getting redesigned Psilocybin, found in mind-bending mushrooms, is one of the compounds researchers hope can be developed into drugs that are safe enough to be taken at home.PHOTO: JON AMON/THE DENVER POST/GETTY IMAGES By Daniela Hernandez Follow and Brianna Abbott Follow Dec. 18, 2022 7:00 am ET SAVE PRINT TEXT Drug developers are designing new psychedelic compounds to treat depression and other mental-health conditions but skip the trip. Mind-bending psychedelics including MDMA (aka “ecstasy”), “magic mushrooms” and LSD are being studied as potential treatments for depression, post-traumatic stress disorder and addiction. Dozens of companies and academic laboratories are also making changes to the structure of those drugs, or designing similar compounds, to take advantage of their therapeutic properties without the high. Human research on the newly developed compounds is just getting started. Some researchers and analysts said the trip itself could be critical to the therapeutic benefit for patients. Drugs including psilocybin and mescaline aren’t patentable because they occur naturally in mushrooms or plants. Others including LSD and MDMA were created in labs decades ago. Global revenue from psychedelics could reach $8 billion by 2027, L.E.K. Consulting estimated. Psychedelic drugs are tightly regulated. Some including MDMA impart effects that last for hours and require patient supervision during medical use. Companies and researchers said creating new compounds with shorter-acting or non-hallucinogenic effects could lead to fewer restrictions, and make them easier for doctors and patients to use. New drugs could also open their use to people who are currently excluded from psychedelic treatment for safety reasons, including a history of schizophrenia or some heart conditions, they said. “We have to create medicines that are safe enough that people can take them at home and put them in their medicine cabinet,” said David Olson, chief innovation officer at Delix Therapeutics, which is developing drugs similar to substances such as LSD and psilocybin but without the trip. The company said it raised some $100 million and plans to move two drugs into human trials next year. Psilera Inc. says it is working on derivatives of psilocybin and the psychedelic DMT, but without the trip and with fewer heart-related side effects. HMNC Brain Health said it is conducting clinical trials on a version of ketamine to treat depression that could reduce its mind-altering effects and hasn’t shown signs of raising blood pressure. Small Pharma said it is developing longer-acting versions of DMT, which typically produces an intense minutes-long trip. Ketamine, seen being prepped by a nurse practitioner, and other mind-altering drugs are being developed for therapies with fewer heart-related side effects.PHOTO: TARA PIXLEY “If you can dial down the risk or perhaps turn the dial up in terms of the effectiveness, that’s the sort of thing that we’re looking for,” said Clara Burtenshaw, a partner at Neo Kuma Ventures, a venture-capital fund invested in psychedelic companies including Small Pharma. Psychedelics modified to remove their high might be less potent, some pharmacologists and researchers said, or might work for some conditions better than others. Some researchers said the trip might be essential to how psychedelics work in the brain. “We don’t know if the mechanism of healing from the classical psychedelics has anything to do with the experience,” said Dan Karlin, chief medical officer at Mind Medicine Inc., which is making a more chemically stable LSD that still imparts a high. Evidence that hallucinogenic effects can be removed without diminishing a drug’s effectiveness comes mostly from animal studies. A study published in September in the journal Nature showed that drugs similar to LSD but without hallucinogenic effects made depression-prone mice more resilient to stressors such as being hung upside down. The antidepressant effects of the experimental compounds were greater than those of some current antidepressants, said Brian Shoichet, a co-author of the study and professor of pharmaceutical chemistry at the University of California, San Francisco School of Pharmacy. In mice, the widely used proxy measure of hallucinations is head twitching, he said. NEWSLETTER SIGN-UP Grapevine A weekly look at our most colorful, thought-provoking and original feature stories on the business of life. Preview Subscribe That doesn’t necessarily mean the compounds will have the same effects in people, researchers said. “It’s a big jump from a mouse to a human,” said David Nutt, a neuropsychopharmacologist at Imperial College London and chief research officer at Awakn Life Sciences Corp., which is developing drugs including a shorter-acting MDMA-like compound. Psychedelic drugs including psilocybin and LSD could help patients grow new neural connections in the brain, some studies in animals and people suggest. The trip, together with therapy, likely help people shift their mind-set and process past experiences, changing their outlook and patterns of thinking, Dr. Nutt and others said. Other companies also are preserving the trip but patenting a change in the manufacturing process or formulation. Cybin Corp. is swapping out atoms in psilocybin to make it faster-acting, Chief Executive Officer Doug Drysdale said. Reunion Neuroscience Inc. said it expects early-stage clinical-trial safety data in early 2023 for a patented psilocybin-like drug tweaked to reduce how long the trip lasts. Filament Health Corp. is making extracts of magic mushrooms and the psychedelic plant ayahuasca that contain a standard amount of active ingredient in each dose, said Ryan Moss, chief science officer. “There’s a whole wealth of pharmaceutical knowledge that hasn’t been applied to this family of drugs yet,” said Henry Fisher, co-founder and chief scientific officer at Clerkenwell Health, a psychedelics research organization working on a clinical trial for a drug from Filament Health.
  20. Kat, if possible, get a script from your doctor. I don't recall what they give, but Pink Eye is horribly contagious.
  21. One day to go Shaun!! You all must be bursting at the seams now! Especially her kiddo!! Congrats to your daughter and very well done too!
  22. Kat, you will most likely be fine with your dosing prior. If you have MM, take a SPUT with you to the airport. You can suck on it for a long time when you get on the plane. If you are concerned about traveling with one, you are not when it is in your mouth. That, along with caffeine in any form should take up any slack. No drinking booze. I suggest having coffee before take off. Having energy shots at hand when boarding! I was terrified to attend the Dallas conference because I had to fly. Well, they really meant it when they stated 'We are only looking for explosives'. There was other stuff there if they were 'looking' for it. They were not. They did however have me open the bag to show them what was making the funny pics on x-ray! It was my Clustermask and regulator! LOL. You may not want to take any alternatives and I do understand that. Do your preventative busts before! If it goes south while you are there, go to the firestation with your mask in hand and ask for some O2? It works many places in the states, so I would try for that solution there first. We all know how bad the ER can be, so that often ranks second. That 'on landing' headache is from the increase in air pressure. I get a hit with the reduction in pressure. So, take off. The plane does not have the same atmospheric pressure as we have at sea level when it is airborne, it is lower. Like a low pressure front moving into your area. If high pressure is a trigger for you, then yes, landing would be the time to be concerned. Have your preparations in order before and your 'prevents' packed for the trip. Slap on a smile and head out! Then report back here, ok?
  23. The adaptability of Clusterheads is notoriously strong Jon!! Has to be!!!! LOL
  24. Hey Kat, I felt the same way. Perhaps you can find a way to trust it and go visit soon!! Pretty sure that Bosco uses seeds to deal with altitude changes, so that might be another layer of protection to make you more at ease. Fingers crossed that you get it figured out and have lovely get-away soon.
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